Early Childhood Family Support

Redirect - Beach Center's Family Support Community on Facebook

2009-10-29T17:05:00.000-05:00

This blog is, for now, not being updated and the original community of practice that spawned it and was the source of many of the great resources posted here is also gone.

But this is not the end, just a new beginning.

The Family Support community has been reborn on Facebook:

. . . and join us in creating a new community of practice

. . . on Facebook . . . on Ning . . . on LinkedIn . . . Twitter

whereever you go online to find and share information

and resources for improving the quality of life of families

with members who have disabilities--we want to be there with you.

Click on the image or go to: Beach Center Family Support CoP on Facebook

In Memory of Jay Turnbull

2009-01-09T10:17:00.001-06:00

http://jayturnbullmemorial.blogspot.com/

Today on January 7, 2009, we are sad to announce that our beloved friend and co-worker, Jay Turnbull died suddenly while at the start of his morning routine. Jay’s father and mother are Rud and Ann Turnbull, Co-founders and Co-Directors of the Beach Center on Disability. He was their inspiration for the Beach Center. He worked at the Beach Center from its beginning in 1988 and provided over 20 years of dedicated service. Jay quickly befriended all of us at the Beach Center and many, many friends in the Lawrence community with his endearing smile, special handshake, and infectious laughter. While Jay was widely known and welcomed in the Lawrence community, he also touched so many lives worldwide through the stories Ann and Rud shared about him and their life together. In so many ways, Jay changed the world.

Without Jay, there would be no Beach Center on Disability. He was our greatest teacher and our biggest inspiration. Jay was and continues to be the heart and soul of our work. It is in his name that we renew our dedication to making life better for all people with disabilities and their families.

You can post your memories, stories, and tributes to Jay to Jay’s friends on a blog dedicated to JT's memory at http://jayturnbullmemorial.blogspot.com/ or email them to Lois Weldon, lois@ku.edu , or Martha Blue-Banning, at mbb@ku.edu.

Visitation will be Friday evening at 6 at the Warren-McElwain Funeral Home, 120 West 13th St., Lawrence, KS. The funeral will be Saturday at 11:00 a.m. at the Plymouth Congregational Church, 925 Vermont, Lawrence, Kansas. Rud and Ann ask you to consider making donations to the Jay Turnbull Fellowship, KU Endowment Association, 1891 Constant Avenue, Lawrence, Kansas 66045-7548, 888.653.6111.

Thank you for all your support and your prayers

The Staff of the Beach Center on Disability

Elevating Disability Policy within the White House Domestic Policy Council

2008-12-22T17:08:00.002-06:00

A CALL TO THE DISABILITY COMMUNITY

FROM RUD AND ANN TURNBULL
BEACH CENTER ON DISABILITY
THE UNIVERSITY OF KANSAS

ELEVATE DISABILTY POLICY WITHIN THE
WHITE HOUSE DOMESTIC POLICY COUNCIL

Background

The audacity of hope lies in the heart of the disability community.

The insistence on rights is still part of its daily agenda.

As individuals with disabilities and their families perform their civic responsibilities, they prove that rights create opportunities for effective citizenship.

The integration of disability policy into other policies can threaten individuals and families affected by disabilities; there are no assurances that policy reforms will always be disability-sensitive and provide for reasonable accommodations or other means for equal treatment.

But the integration of disability policy also creates opportunities because policy-integration advances integration and full participation of people with disabilities.

Individuals with disabilities and their families need a change they can believe in – a change that only President Obama and his leadership team can offer.

They need the opportunity to participate as equals in domestic policy debates.

So, we propose elevating disability policy.

Proposal

The President should create a Disability Policy Section within the White House Domestic Policy Council.

The Disability Policy Section should have the same status, opportunities, responsibilities, and staffing as policy sections related to all other major areas of domestic policy.

In particular, it should have the opportunity and responsibility to participate in all other units of the Council to develop new or assure the vigorous implementation of current policy.

To these ends, it should have leadership with the same expertise as the other sections related to domestic policy.

To the maximum extent practicable, it should be directed and staffed by individuals who have disabilities and are parents or other close family members of individuals with disabilities.

That kind of staffing will acknowledge that families are the core units of society and that attaining the nation’s four disability policy goals – equal opportunity, economic self-sufficiency, independent living, and full participation – depends on the strength of families as much as on the opportunities for and strength of people with disabilities.

Accordingly, it should be directed by an individual who has extensive experience in developing disability policy as a result of service in Congress, as a senior member of the staff of a Congressional committee with jurisdiction over disability policy, or as a member of an executive agency responsible for implementing disability policy.

Further, its director or the director’s designee should have ex officio membership on such existing federal commissions and committees as the National Council on Disability, the President’s Commission on People with Intellectual Disability, and comparable entities.

If you agree in substance with our proposal, please contact

· Melody.barnes@ptt.gov

· Heather.higginbottom@ptt.gov

They are members of the transition team charged with domestic policy work.

School Discipline and Behavior Intervention: REDUX

2008-12-17T17:37:00.002-06:00

Update! Check out this free IDEA online discipline tool!

Of all the posts on this blog, the ones related to school discipline, positive behavior interventions, and the stay put rule are the most popular -- so it is time for a school discipline and behavior intervention REDUX. We've put a lot of useful information up regarding IDEA, behavior, and discipline, but if you think of something you want us to add or a question you would like answered, just let me know.

We dispelled the 5 big Myths about Discipline and IDEA .
We discussed Positive Behavior Interventions and Supports (PBIS) and when IDEA requires the school to consider using PBIS. We also provide some links to PBIS resources in this post.
We discussed IDEA's requirements regarding long and short term suspensions or expulsions.
We explained how and when the 10-day rule turns a series of short term removals into a long term removal.
We discussed IDEA's discipline rules with respect to behavior involving weapons, drugs, or serious bodily injury .
We went over manifestation determinations and when and how they are applied.
We explained how the stay-put rule applies (or doesn't apply) to disciplinary removals.

We've covered a lot of ground here, and I hope it has been helpful. Any other specific discipline or behavior topics you want me to cover?

Early childhood inclusion: inclusion in a natural environment

2008-11-23T09:51:00.003-06:00

The least restrictive environment mandate applies to children ages 3-21 under Part B of the Individuals with Disabilities Education Act (IDEA). For children age 0-3, inclusion is guided by Part C of IDEA, which requires inclusion for infants and toddlers with disabilities to be fostered through early intervention services provided in "natural environments." This article provides an overview of the natural environment mandate.

What is a Natural Environment?

A natural environment is one in which a child would receive services if he or she did not have a disability. In other words, a natural environment is one that is typical for children without disabilities. Thus the word "natural" simply refers to a setting that is not exclusively provided for children with disabilities. Inclusion for early intervention is therefore a bit different from inclusion in schools --it is about "normalization" rather than just interaction and participation alongside children without disabilities. Natural environments include both the home of the child and inclusive care settings. Since children without disabilities are often raised entirely in the home environment, the home is considered a natural environment even if it does not provide opportunities for the child to interact with children who do not have disabilities. Since many children without disabilities are also in child care settings, those child care settings that include children with and without disabilities are also natural environments.

What is the Natural Environment mandate?

Put simply, the requirement to deliver early intervention services in a natural environment is really a legal preference or presumption. A child must receive early intervention services in a natural environment unless the purposes of early intervention cannot be successfully achieved in a natural environment. Thus, services can be in a non-natural environment if the needs of the child require it--such as when a child requires extensive medical interventions. But early intervention services in a care setting that does not include children without disabilities (a setting that is not a natural environment) must be justified in the Individualized Family Service Plan (IFSP) based on the child's needs.

Choosing the Natural Environment: Home vs. Inclusive Care Settings

Since the home is considered a natural environment and an inclusive care setting is also considered a natural environment--how do you decide which natural environment to use? IDEA provides some guidance here in that it says the "most appropriate" natural environment should be used--but how do you decide which natural environment is most appropriate? Appropriateness in IDEA refers to the benefit the child will receive. So, whether a home environment or inclusive care setting is most appropriate depends on which is more likely to provide the most benefit to the child. For example, if the IFSP team determines that the child would particularly benefit from opportunities to interact with children without disabilities, than an inclusive care setting would be the most appropriate natural environment. Note that choosing the natural environment is not an either or question--some early intervention services may be best provided in the home while others may be best provided in an inclusive care environment.

IDEA and progress toward full inclusion

2008-11-09T00:16:00.005-06:00

Sometimes a child is not ready for full inclusion in the classroom and may even need to receive services in a segregated environment. This is why IDEA provides a continuum of placements and requires maximizing inclusion rather than full inclusion. But if one of the goals of special education is to prepare the student for life after school, we must ask how well those segregated environments prepare the student to work, learn, live, and play in the community. Our national goals of equal opportunity, full inclusion and participation in society, independent living, and economic self-sufficiency for students with disabilities cannot be achieved through the use of segregated settings. Even if we can't achieve full inclusion for all students, we can ensure that the child's educational opportunities become increasingly inclusive over time.

The mandate for increasing inclusion is not explicit in IDEA. IDEA explicitly provides many rules about inclusion in schools, inclusion in the general curriculum, and inclusion in classrooms--as I discussed in the Inclusion in Schools post--but doesn't say anything specifically about increasing inclusion. So where does this rule originate? Where is this requirement?

You have to look at the forest instead of the trees. Inclusion is one of the purposes behind IDEA. Inclusion is part of the definition of an appropriate education. In conducting the evaluation, the IEP team must examine how the student's disability affects inclusion. In creating the IEP, the team must--in addition to maximizing inclusion--include goals related to the student's access to and progress in the general curriculum (part of inclusion).

So . . . IDEA requires you to know what needs affect inclusion, address those needs with appropriate services, and then evaluate progress and re-evaluate what needs affect inclusion. If you are successfully addressing the reasons the student can't receive services in a more inclusive environment, shouldn't it logically follow that you are improving the student's ability to receive education in an inclusive setting? Shouldn't the maximizing the student's inclusion in school mean responding to improved ability to access and participate in inclusive settings, lessons, and activities? Put simply, if the student is not better able to participate in an inclusive environment than he or she isn't making significant progress and isn't receiving an appropriate (and inclusive) education.

Inclusion in Schools: more than just inclusion in the classroom

2008-10-25T15:49:00.010-05:00

Part B of the individuals with disabilities education act (IDEA) requires inclusion in schools to be maximized for each child with a disability. But what does that really mean? What is inclusion? Some people still seem to think it means just ensuring inclusion in the classroom, or in other words, placement in a regular education classroom. Some may even think inclusion in schools with children who do not have disabilities is sufficient to meet IDEA's requirements for inclusion. Still others may argue that inclusion in schools refers only to academics. In this inclusion article, I try to clear up some of these misconceptions about one of the most controversial issues in special education: inclusion and the least restrictive environment mandate (LRE).

What is Inclusion and What is the LRE?

I am discussing these terms, inclusion and LRE, together because they are often used interchangeably. If you want to be precise, inclusion is a theory about participation of children with disabilities and the LRE is the legal mandate for inclusion in schools as set out in IDEA.

What Does IDEA Require for Inclusion in Schools?

The easiest way to remember and apply the LRE/inclusion rule is to start by asking: What is typical for students without disabilities? Whatever that is, the LRE mandate requires the school to provide students with disabilities to the "maximum extent appropriate" with the same opportunities as children without disabilities. This means access, participation, placement, and interaction in the same activities alongside students without disabilities. Thus, inclusion in schools includes:

Inclusion in the classroom that students without disabilities attend
Participation in the regular academic curriculum or "general curriculum"
Participation in extracurricular activities (clubs and sports)
Inclusion in other school activities with other students (meals, busing, recess, etc.)

What Does Maximizing Inclusion in Schools Mean?

Not all students with disabilities can learn what they need to in regular classrooms or participate fully in the general curriculum or in all school activities. IDEA recognizes this and requires maximizing inclusion in schools rather than full inclusion in schools or even full inclusion in the classroom. To maximize inclusion means to provide as much inclusion in the above areas as possible and providing separate services, environments, and activities only when inclusion is not appropriate (i.e. harmful or not beneficial) because of the child's disability.

Other resources for inclusion in schools and inclusion in the classroom:

The philosophy of inclusion

Benefits of inclusive education

Inclusion strategies
Inclusive teaching

Big list of inclusive education resources

Note: This post covers inclusion in schools for students ages 3-21 under Part B of IDEA--not inclusion in the classroom for infants and toddlers under Part C of IDEA.

Discipline and Safety: Weapons, Drugs, and Injury

2008-10-02T15:43:00.002-05:00

Update! Check out this free IDEA online discipline tool!

We all want safe schools. When a student's behavior compromises the safety of the school and the safety of students, the school must act--particularly when the behavior involves weapons, drugs, or serious bodily injury. Behaviors that involve weapons, drugs, or serious bodily injury are categorically different from simple violations of the school's code of conduct, and the Individuals with Disabilities Education Act (IDEA) recognizes the difference and makes student and school safety a priority. IDEA provides exceptions to its standard discipline provisions for a student with a disability whose behavior involves weapons, drugs, or serious bodily injury.

In this post, I discuss discipline under IDEA when the student's behavior involves weapons, drugs, and serious bodily injury--starting with the heightened flexibility of schools to ensure safety by removing the student from the school.

What can a school do when a student's behavior involves weapons, drugs, or serious bodily injury?

First, I should note that none of the other discipline options are off the table just because the student's behavior involved weapons, drugs, or serious bodily injury (see Top 5 Myths of IDEA Discipline ).

Second, IDEA specifically allows schools to immediately put the student in a interim alternate educational setting (IAES) for up to 45 days without discussion and before a hearing, manifestation determination, or other procedures even begin. Of course such removal does trigger the long term suspension rules, but with one exception as discussed below.

Third, even if the behavior (the weapons, drugs, or serious bodily injury violation) turns out to be a manifestation of the student's disability, the school can keep the student in the IAES. The student with a disability's behavior is a threat to student safety, and thus, the school does not have to send the student back to his/her regular education setting even if the behavior is a manifestation of disability.

So what behavior triggers IDEA's exceptions for weapons, drugs, and serious bodily injury?

Weapons--All a student has to do to violate this part of the rule is to carry or possess a weapon on school grounds or at a school function. A "weapon" is (basically) defined as a device used for or readily capable of causing death or serious bodily injury according to the federal criminal code.

Drugs--If the drug is illegal possession or use is sufficient behavior to trigger a violation. If the drug is a "controlled substance," or in other words a drug that is available by prescription, a violation occurs if they sell or solicit the sale of the drug. The distinction here is that IDEA does not intend to provide the exception when a student with a disability is simply using a drug legally prescribed to him or her.

Serious Bodily Injury--As defined in the criminal code, serious bodily injury means injury that involves substantial risk of death, extreme pain, serious disfigurement, or loss of functional ability. It is a pretty high bar all things considered, but remember that this definition is only for the exception to the regular rules governing discipline--schools may still follow those procedures.

Discipline and Behavior: Top 5 IDEA Myths

2008-10-02T14:36:00.004-05:00

There are a lot of myths out there about discipline or punishment and the individuals with disabilities education act (IDEA). Most of the myths suggest that the IDEA prevents schools from disciplining or punishing students with disabilities. Here are my top 5 IDEA myths related to discipline, punishment, and behavior.

Myth 1: IDEA doesn't allow students with disabilities to be punished for bad behavior.

Ridiculous. IDEA doesn't affect most types of discipline except to say that you can only discipline students with disabilities to the same extent and in the same manner that students without disabilities are punished. To do otherwise is discriminatory. There are only two situations in which discipline is affected by IDEA: when the discipline involves a long term suspension or when the behavior impedes learning. In the latter case, the punishment isn't affected, the school simply has to also act to address the behavior such as through positive behavior supports. Detention, extra work, sending the student to the office--pretty much all of the standard punishments--are unaffected by IDEA.

Myth 2: IDEA doesn't allow schools to suspend students with disabilities.

Nonsense. IDEA allows schools to suspend a student with a disability for up to 10 days without triggering any special protections or inquiries. As mentioned before, it is only long-term suspensions that are different.

Myth 3: You can't discipline or punish a child with a disability if the behavior is caused by the disability.

You'd think this would be true since it seems pretty unfair to punish a child for a behavior that they can't control (that is a manifestation of their disability), but it's a myth. A manifestation determination only comes into play if there is . . . you guessed it . . . a long-term suspension. IDEA allows schools flexibility here, because the legislature recognized that consequences can be an important part of addressing a student's disability related behavior needs. IDEA does, thankfully, allow schools to take into account the student's disability in determining disciplinary action. So, one would hope that schools use this flexibility to provide a more equitable approach to disciplining a student whose behavior is not entirely under their control. One that is calculated to improve the behavior would be best. Arguably, if a student's behavior is caused by the child's disability, it represents one of the student's disability related needs and should be addressed (at least in some way) in the student's IEP.

Myth 4: IDEA discipline provisions only protect students who have already qualified for special education.

Just because a student hasn't been found eligible for IDEA--i.e. hasn't been evaluated--doesn't necessarily mean the student doesn't have a disability or doesn't qualify for the protections offered by IDEA's discipline provisions. A student (or parent) can claim IDEA protections if (a) their child does have a disability and (b) the school "had knowledge" about the disability before the behavior occurred. The schools is considered to "have knowledge" of the disability if the parent or school personnel expressed concerns about the student having a disability or requested an evaluation. Of course, if the parent refused to consent to an evaluation or the child is evaluated and found not to have a disability--the IDEA discipline provisions don't apply.

Myth 5: It is reverse discrimination to not punish students with disabilities the same as other children.

Ok, in some very limited situations, this might be somewhat true (although it is hard to come up with an example)--but that's why IDEA's disciplinary default is the same treatment rule. All things considered, the impact of discipline on students with disabilities--particularly when it takes away from time in instruction--is often going to be greater than it will be on other students. Students with disabilities are also more commonly exposed to negative treatment from other students that can lead to behavior issues even in the most well-behaved of children. Add to that the fact that some behaviors are only going to be partially under the control of some students with disabilities and that students with intellectual disabilities may lack necessary understanding of the rules (but will still be subject to them), and it's pretty clear that the system is still weighted against students who have disabilities. More than anything else, IDEA provides school personnel the ability to balance out these inequities and thereby give students with disabilities a chance to receive the benefits of our education system to which all children are, or should be, entitled.

Positive Behavior Interventions & Supports (PBIS): IDEA requirements

2008-09-13T20:23:00.002-05:00

Update! Check out this free IDEA online discipline tool!

Positive Behavior Interventions and Supports (PBIS), also called positive behavior supports (PBS), are an approach to changing behavior that encourages (supports) positive behaviors rather than just punishing negative behaviors. PBIS can be implemented school-wide or be used to support positive behavior in individual students. Some schools use PBIS and some schools don't, but in some situations, the individuals with disabilities education act (IDEA) requires a school to consider using positive behavior interventions and supports, whether or not PBIS is part of the school's usual approach to problem behavior.

This post discusses when IDEA requires consideration of positive behavior interventions and supports and what that means. If you just want to know more about PBIS, you should check out the Positive Behavior Interventions and Supports Technical Assistance website (sponsored by OSEP). If you are interested in the law and PBIS, read on.

When is a school required to consider positive behavior interventions and supports?

The basic rule is that the Individualized Education Plan (IEP) team must consider positive behavior interventions and supports and other strategies to address a child's behavior if the behavior impedes the child's learning or that of others.

Let's break that down to figure out when PBIS must be considered.

First, the school is only required to consider PBIS when a behavior impedes learning. IDEA doesn't define what "impede" means, but generally, it means that PBIS is required when the behavior is disruptive of teaching or otherwise has a significant effect on time spent or concentration on learning.

Second, the PBIS provision of IDEA specifically says impedes the learning of the student or others. So, PBIS must be considered regardless of whether the behavior interferes with the child's studies or disrupts the learning of other students.

So, that tells us when PBIS must be considered; but what does it mean to "consider" PBIS? Let's break it down a bit more.

Third, to "consider" positive behavior interventions and supports, one must know what PBIS is. The IEP team has to know enough about PBIS as a positive approach to addressing and preventing problem behavior to be able to weigh its pros and cons. Since the IEP team must make the decision, "consider" also suggests discussing PBIS among team members. Finally, if the team has considered positive behavior interventions and supports, it will have one or more reasons for choosing to use or not use PBIS.

Fourth, the school is required to consider PBIS and other strategies. In other words, the school has to consider more than one approach to behavior--PBIS is required, but not sufficient. So to "consider" positive behavior interventions and supports, the school must have some basis of comparison, with PBIS on the one hand and some other strategy or approach on the other.

So that's the basic rules requiring consideration of positive behavior interventions and supports in IDEA. PBIS must be considered when behavior impedes learning of the child or others. Considering positive behavior interventions and supports requires (a) knowing enough about PBIS to evaluate it as an approach, (b) discussing PBIS, (c) comparing PBIS to other approaches, and (d) having one or more reasons for deciding to use positive behavior interventions and supports.

One final note: it can be (and has been) argued that by specifically naming PBIS, the law creates a preference for positive behavior interventions and supports and against aversive methods of punishing behavior. But the law doesn't explicitly require positive approaches to behavior--but from what I understand, IDEA's requirement to use evidence based methods makes many of the aversive approaches legally risky. PBIS is specifically mentioned in the statute, so positive behavior interventions and supports are a pretty safe bet when it comes to meeting the evidence-based methods standard.

The "Stay Put" provisions

2008-09-07T13:28:00.004-05:00

Update! Check out this free IDEA online discipline tool!

When the parents and the school disagree about a child's IEP services or setting for services there are three ways it can turn out: somebody gives in, they compromise, or they end up in due process (or mediation/arbitration). A common question when parents proceed to due process to challenge a school's decision is:

In what setting are services provided to my child while we are in due process?

The school and the parents often have differing opinions as to the appropriate placement for the child during the due process hearing--but the basic rule and answer that IDEA provides to this question is that the "then-current" placement of the child is maintained during the resolution of the dispute. In other words, the child "stays put" unless the hearing officer or arbiter eventually rules that the school's preferred placement is the appropriate one. That's why these provisions in IDEA are often referred to as the "stay-put rule."

There are two exceptions to the stay put rule:

(1) The parents and the school can ignore the stay put rule if they agree on an alternate placement during the hearing (but both must agree).

(2) Proposed changes in placement and other removals based on disciplinary incidents are also treated differently. In 2004, IDEA was amended to state that for discipline-based removals, the 'stay put' placement is the disciplinary placement. In other words, while waiting for a resolution to the dispute, children removed from their IEP placement for disciplinary reasons must remain in the "interim alternate setting" or other setting in which they were placed as part of the school's response to their behavior.

The stay put rule, as first glance, may seem fairly straight forward with little to dispute. Nevertheless, it is often a contentious issue with many of the arguments between schools and parents predicated on different opinions as to what the "then-current" placement of the child was when due process was initiated. This issue arises most often when the child is going through some form of transition (such as from preschool to grade school or when changing districts). The courts are split on many of these issues and there are significant differences between the court decisions in different jurisdictions, but the courts often turn to the last agreed-upon IEP placement in making their decision.

Manifestation Determinations: Behavior, Disability, and Discipline

2008-08-24T20:44:00.010-05:00

Update! Check out this free IDEA online discipline tool!

Your child has been suspended from school for two weeks or more. You know that the Individuals with Disabilities Education Act (IDEA) requires a “manifestation determination” to be conducted whenever a suspension or expulsion lasts more than 10 days. But what exactly is a manifestation? How do you determine if one exists? Who conducts the manifestation determination? What happens if your child’s behavior is found to be a manifestation of his or her disability? These are important questions—so here are some straight answers:

What is a manifestation determination?

A manifestation determination is an inquiry into whether your child’s behavior (the behavior leading to the suspension) was:

(a) Caused by your child’s disability,
(b) Directly and substantially related to child’s disability, or
(c) a direct result of the school's failure to implement your child’s Individualized Education Plan (IEP).

If the answer to any of these questions is yes, IDEA states that the behavior is considered to be a manifestation of the student's disability.

If the answer to all of these questions is no, IDEA states that the behavior is not a manifestation of the student's disability.

Who conducts the manifestation determination?

IDEA requires a manifestation team to meet and conduct the manifestation determination. The manifestation team must include the child’s parents, a representative of the student’s school, and relevant members of the IEP team. So you are a member of the team that determines whether or not your child’s behavior was a manifestation of his or her disability.

How do you determine whether the behavior is a manifestation of the child’s disability?

IDEA is not very specific about the hows of a manifestation determination. Nevertheless, one can assume that in making the determination, the manifestation team will consider and discuss evidence related to your child’s behavior, your child's disability, and the school’s implementation of the child's IEP. You and the other members of the manifestation team must determine whether that evidence supports answering each of the questions “yes” or “no.”

You should know that there is a high bar for finding a manifestation. IDEA requires the connection to the student's disability to be direct and substantial or otherwise caused by the student’s disability for it to qualify as a manifestation. The connection can't be speculative or just one of many factors contributing to the behavior. Similarly, any failure to implement IEP services must have directly resulted in the behavior for it to be considered a manifestation.

So what happens if the team determines that the behavior is a manifestation?

If your child’s behavior is determined to be a manifestation of his or her disability, the disciplinary action has to be moderated in two ways:

First, your child must be returned to his or her usual placement (there is no change in placement unless the parents and school agree otherwise).

Second, a functional behavior assessment (FBA) must be conducted and the IEP team must create a behavioral intervention plan (BIP) or modifying an existing behavior plan to respond to the results of the FBA. In other words, the IEP team must address your child's behavior because, as a manifestation of the child's disability, it represents one of your child's needs.

Special Education Teaching Resources

2008-07-28T17:55:00.003-05:00

There are a lot of resources on the web for special education teachers. I would gather them up, but it's already been done pretty well by teaching tips. They have a list of 102 websites/resources on teaching students with special needs in a post entitled "The Ultimate Guide to Special Needs Teaching."

I've also thought about putting together a glossary of IDEA, special education, and early intervention terminology and acronyms--but again, others have beat me to the punch. Here are some glossaries to help you sort through the jargon of special education and IDEA speak:

Wrightslaw glossary--IDEA terms defined

Here's DSU's glossary with related links and some videos associated with each term.

The Belleview district in Washington has a nice list of acronyms related to special education--although some are specific to Washington.

The Tennessee SIG (state improvement grant) site also has a nice downloadable guide to terms and acronyms, but again there are going to be some that are state specific.

Blog Features

2008-07-21T00:52:00.003-05:00

As you may have noticed, we reworked the blog. This change was done so that we could include and highlight some key features.

Search our blog, the sites of our Friends in Blogging, or our list of Law Blogs

The search box (a widget provided by Google) provides a means to search our blog for entries on topics you are interested in. But it gets even better--by selecting the tabs in the search results, you can also see what entries other blogs have related to your search terms. The tabs include: Our Friends in Blogging, Law Blogs, and the Web. These first two searches are specific to those sites listed under the same headings in this blog (scroll down and look at the left navigation bar).

RSS subscription through a reader or in your email

For those who don't know much about subscribing to a blog, this widget (from feedburner) provides the choice of receiving updates in a feed-reader or in your email.

Translation into eight other languages

For individuals who have limited proficiency in English, we have included the Google translation widget. Just click on a flag and the whole site is translated into the language represented by that flag.

If you haven't tried out any of the features, I recommend giving them a spin. The search, in particular, is just remarkably useful.

Long-term or short-term suspensions: what's the difference?

2008-07-18T11:39:00.003-05:00

Some of the most common questions I field about SPED law and IDEA are about behavior and discipline. And this is one of the most fundamental questions in all discipline matters:

Is it a long-term or short-term suspension (or expulsion)?

There are two steps to answering this question. The first is easy; the second is a bit complicated.

STEP 1:

If the child is suspended for MORE than 10 school days in a row (i.e. at least two weeks + one school day), it is a long-term suspension. If that's the case, you're done. Skip on down. If not, go to Step 2.

STEP 2:

If there is a sufficient Pattern of Removals, it is a long-term suspension. A sufficient Pattern of Removals exists when:

The child has been suspended more than once (a series of removals).
Adding up the days suspended equals MORE than 10 days (in a given year).
The behavior in each suspension is substantially similar.
Additional factors--such as a high number of days in suspension or suspensions occurring close together (over a short time period)--support the idea that it is just a broken-up long-term suspension

All of the above must be met to find a pattern of removals, and as you can see, there is a significant amount of leeway in determining whether some of these factors have been met. If all are met, it is a long-term suspension. If not, it is a short-term suspension.

How do the long and short term suspension categories affect the child's rights?

If the suspension is long-term, also sometimes called a change of placement, IDEA requires:

A manifestation determination to be conducted to identify if the child's behavior resulted from either the child's disability or failure to implement the IEP.
Some actions be taken by the school to address the behavior (depending on circumstance and results of the manifestation determination).
The child's IEP services to be provided during the suspension period (starting on day 11).

If the suspension is short-term, IDEA has only one requirement:

Any disciplinary action chosen by the school must be "in the same manner and for the same duration" that a child without a disability would be punished. In other words, the discipline cannot be discriminatory--the school can't proscribe a more severe punishment for a child just because that child has special needs.

I'll try to follow up this post with others on discipline to clear up some of the confusion around manifestation determinations, behavior assessments, interim alternate educational settings, and positive behavior supports.

Your choice of Part C services

2008-07-13T17:34:00.001-05:00

Some time ago, I made a table of the major differences between Part B services (for school age children) and Part C services (for infants and toddlers) under the Individuals with Disabilities Education Act. Looking at that table today, I realize I didn't include one of my favorite provisions of Part C:

Parental Consent.--The contents of the individualized family service plan shall be fully explained to the parents and informed written consent from the parents shall be obtained prior to the provision of early intervention services described in such plan. If the parents do not provide consent with respect to a particular early intervention service, then only the early intervention services to which consent is obtained shall be provided. (20 USC 1436(e))

Read the last sentence again. In Part B, the IEP is developed and the parents then have an all-or-nothing choice to consent to the IEP or not. Sure, parents can--and absolutely should--inform the school district of their thoughts and feelings about different services offered under an IEP; but it simply isn't the same thing as having the authority granted in Part C.

Part C parents have the equivalent of a line-item veto of offered services. They can reject or continue to negotiate some services without affecting other offered services that they and the rest of the IFSP team agree on.

Not only is this good for the parents, it is good for everyone. It starts things off with recognition of what everyone agrees on, implements agreed on services (so they aren't delayed by disagreement about other services) and finally, focuses further discussion on those disagreements.

Families and disability blogosphere

2008-07-08T08:51:00.001-05:00

There is a growing number of parents of children with disabilities starting blogs and sharing their experiences and knowledge (and joys, hopes, heartache, and more) online.

I am a big believer in the wisdom of families, and so this post is a tribute to those families who have joined the blogosphere and helped create a community of family/disability bloggers.

I've created an extensive blogroll of links entitled The Big List of family/special needs blogs. I encourage other bloggers to look through them and share some 'link love' with a few that you most like--that is how communities are built on the web.

Evaluation for Early Intervention REDUX

2008-07-05T09:33:00.000-05:00

While not as comprehensive as I'd like, we've gathered a significant number of posts on evaluation for early intervention--enough to do a REDUX. So, lets see what we have . . .

If you are a new parent who has concerns about your child's behavior or development, there are several good posts by Terri Mauro and others in our Evaluation Round-up--includes good tips about what to do before, during, and after you consult with a physician.

A good bit of news for parents who are considering a genetic test for their child (or who are worried that their family medical history will affect their insurance rates) as part of the diagnosis process--the Genetic Information Non-discrimination Act of 2008 was enacted.

If you are a parent who is getting ready to start the early intervention evaluation process, you might find these posts helpful in understanding:

The difference between screening, assessment, and evaluation.
The purpose of evaluations for early intervention.
Legal requirements for the two types of evaluation in early intervention.

Once you are past the evaluation stage and getting ready to plan services, you might want to check out our posts on:

Early Intervention Evaluation Round-up

2008-07-02T14:31:00.000-05:00

Time for a quick look around at what other sites have to say to parents who are concerned that their young child might have a disability or who are entering into the early intervention system.

About.com has a gem of a parent writer and blogger in Terri Mauro. If you haven't seen her blog and other resources, you should check them out at About.com: Parenting Special Needs. Some on-topic posts that I recommend include:

Another About.com writer, Ann Logsdon, writes a very good column/blog on learning disabilities--but some of them are just good advice for any parent of a child with a disability. One example, related to our topic of evaluation for early intervention, is about Bayley Scales of development in early assessment.

Another good introduction to development and potential delay is provided by ChildCareAware--Does your child have special needs?

For new parents wondering if their child's development or behavior might indicate an Autism Spectrum Disorder, Andrew D. has a nice blog entry that gives a brief overview of the signs and criteria for diagnosis--What is Autism/PDD?

I welcome other additions to this list--put them in the comments below and I'll move them up into the post.

A Second Home(page)

2008-06-29T21:09:00.001-05:00

The Beach Center blog is now being republished at HealthCare.com. In other words, we now have a blog there that simply lists the titles to every post from here, and if anyone clicks on one--it sends them to the actual story on this website.

This is similar to what we do with PatriciaEBauer.com--just look at the sidebar to the left of this post. She has the best disability news site around and is nice enough to let us republish her updates on our site. I have been considering syndicating another blog in our sidebar, but it is difficult to choose. Suggestions?

Two Evaluations in Early Intervention

2008-06-28T11:06:00.001-05:00

The Individuals with Disabilities Education Act (IDEA) states that every state system of early intervention must include:

"A timely, comprehensive, multidisciplinary evaluation of the functioning of each infant or toddler with a disability in the State, and a family-directed identification of the needs of each family of such an infant or toddler, to assist appropriately in the development of the infant or toddler" (Sec. 1435(a)(3)).

This provision clearly requires two evaluations--one focused on the child, and one focused on the family. Each of these evaluations plays an important role in fulfilling the purposes of early intervention and has its own requirements.

Child Evaluation

The IDEA provision above includes three requirements related to the evaluation of a child suspected of experiencing (or being at risk for) developmental delay:

(1) Timely. One of the primary purposes of Early Intervention is to . . . uh . . . intervene early. Providing child services early on may prevent or reduce the impact of the disability on the child's life. So, naturally, an evaluation of a child for early intervention should occur as soon as possible when their is a reason to suspect the child might have a disability. What exactly is timely? The prior regulations to IDEA set a two day standard, but the newly proposed regulations would change that to as soon as possible--or in other words, what is reasonably timely under the circumstances (whatever they are).

(2) Comprehensive. Preventing or reducing the impact of disability also requires an evaluation to be sufficiently comprehensive--it must address all suspected areas of disability. For Early Intervention there are five categories of development to assess: Physical, Cognitive, Communication, Social/Emotional and Adaptive. The required statement in the IFSP of present level of development uses these same categories. Additionally, IDEA requires evaluation of the child's unique strengths as well as needs.

and (3) Multidisciplinary. The history of assessment and evaluation exposed the need for a cross-disciplinary approach to the complexities of evaluating the developmental needs of an infant or toddler. Therefore, IDEA requires that an evaluation be multidisciplinary and that no single method of evaluation be used to determine eligibility and needs for services. It also helps ensure that appropriate services are identified that will meet the child's needs.

Family Evaluation

While the requirement to evaluate the child suspected of developmental delay includes significant provisions guiding the procedure for evaluation, IDEA is considerably less clear about necessary elements for the family assessment. Still, there are some standards in the statute and in the regulations (although I should note that new finalized regulations have not been published for Part C yet). The Evaluation must:

Assess the family's strengths and needs related to enhancing their child's development. This includes the family's resources, priorities, and concerns.
Be voluntary. Parents can turn down the family assessment.
Be based on information the family provides (interview).
Incorporate the family's description of their strengths and needs.
And, finally, it must identify services needed to enhance the family's capacity to meet the needs of their child.

These two evaluations, child and family, provide the foundation for early intervention services and development of the IFSP.

Special Ed in NY--all cards on the table

2008-06-17T15:21:00.001-05:00

I just want to briefly comment on a story I saw on PatriciaEBauer.com:

New York Schools start posting special education information online.

Assuming the privacy issues are properly taken care of (I assume they are and no one's personal information will be compromised), this is a remarkable step forward in a system that is not known for its willingness to open up and be transparent in its activities. Kudos to NYC.

Giving to Charity without spending any (additional) $$$

2008-06-17T14:26:00.001-05:00

There are many good organizations that serve families of children with disabilities that rely heavily on donations. Some, such as our friends at Parent to Parent USA, manage on almost no budget at all.

Thanks to the internet, there are now ways to support these worthy causes without spending a dime, or at least not spending a dime more.

The most completely free is GoodSearch. GoodSearch is just a yahoo powered search tool that donates a bit of each advertising dollar it receives (all search engines make dollars from ads) to a charity of your choosing. The charity must be registered with GoodSearch, of course, but there are many to choose from and you can always ask the charity you want to contribute to to register with the site. I am sending my GoodSearch pennies to P2P USA (they are registered).

GoodSearch is easy to use. I recommend downloading their search tools for your browser--that way you have a goodsearch in your browser bar and you don't have to go to their site to search and donate. BUT, make sure you remember to select the charity you wish to donate your GoodSearch profits to from their main page.

GoodSearch also has a companion site called GoodShop. You can do online shopping through GoodShop at Amazon, Ebay, itunes, Toys R Us, Priceline, Flowers.com, Gap, and a whole bunch of other stores and services you'd recognize. The Good part is that for every purchase, the company donates a certain % of the price to your selected charity. Another service, Giveness, is very similar and seems to give a larger amount per purchase to your charity--although I don't think P2P USA is currently registered at Giveness.

If you are running a non-profit, there are a few other fundraising aids available that you should check out:

Google Grants -- provides in-kind advertising for non-profit groups to increase awareness and traffic to your site. You have to apply, but the eligibility criteria doesn't seem to difficult to meet.

Fundable -- gives you a website to raise a specific amount of money for a particular event, goal, or purpose in a specific amount of time. People can pledge money online to meet the $$ goal, and if the goal is met--it collects the cash. If the goal is not met--it ends and the pledges are released.

cMarket Online Auctions -- a service that lets you put a charitable auction online.

Finally, there are few other sites that are worth a mention (even though they can't be used for family support and disability causes):

Free Rice--a vocabulary game that challenges you to identify the meaning of words . . . every correct answer gives a few grains of rice to the UN Food program and the bowls fill up reasonably quickly (especially if you are a vocab wiz, which I am not).

Ripple--you click, watch a brief advertisement, and they donate to some international causes providing water, food, education, or money (finance loans) to those in need.

Is "doing what works" working for special education?

2008-06-06T17:06:00.002-05:00

The passage of the No Child Left Behind Act (NCLB) made doing "what works" a focus of school improvement. The what works principle is as simple as it sounds--that schools and teachers should use methods for teaching that have been proven to be effective. In keeping with efforts to align general and special education, the 2004 Amendments to the Individuals with Disabilities Education Act (IDEA) also adopted the what works principle. And it does make perfect sense--who could possibly argue with doing what works? One could argue that IDEA has always included the principle of what works in its requirement for an appropriate education--but the principals are somewhat different.

The NCLB takes 2 basic approaches to identifying what works. First, it emphasizes use of methods that are based on research. Second, it uses standardized assessment and a school's progress toward the goal of educating all children as methods of identifying success. IDEA has always required assessment of individual progress, but the 2004 amendments added the requirement to use evidence based methods and emphasized inclusion of special education students in standardized testing and school progress.

So has it worked? Honestly, I'm not sure and perhaps it's too early to know. At this stage it is easier to look at implementation than outcomes.

Research Basis for What Works

The Institute for Education Sciences publishes a What Works Clearinghouse that

"aims to promote informed education decision making through a set of easily accessible databases and user-friendly reports that provide education consumers with high-quality reviews of the effectiveness of replicable educational interventions (programs, products, practices, and policies) that intend to improve student outcomes."

In other words, the WWC reviews the research and identifies what works and what doesn't. There is also a new website from the Department of Education called Doing What Works. To a large extent, content on the DWW website is based on the information from the WWC website--but their focus is on explaining how effective methods work and how to implement them. I first found out about the DWW site from a news alert from the National Association of Special Education Teachers.

While both sites have much to admire and quite a lot of good information about the research basis for teaching math, reading, and English--I couldn't find anything on special education or related services.

So, is there a comparable resource for special education instructors and directors?

I am also wondering the extent to which schools trust the assessments of what works on these websites . . . my very limited experience suggests that some instructors and administrators prefer to rely on their own and their colleagues' personal experiences.

In short, my current perspective is that the what works principle in special education is still mostly on the books . . . at least as far as reviewing the research base goes . . . but, please, let me know if there is more going on out there than I know . . . .

Screening, Evaluation, and Assessment

2008-05-29T09:51:00.001-05:00

I have been using the term evaluation in a very general sense, but parents are likely to hear other terms being tossed around, such as screening and assessment. While these terms are often used interchangeably, they don't actually refer to the same part of the evaluation process.

Screening refers to the procedures used to determine if a child is likely to be experiencing or at-risk for developmental delay. This is often the first step in the evaluation process and serves as a form of triage for evaluation. In other words, screening is used to determine who should be fully evaluated for eligibility for Early Intervention services.

Evaluation refers to procedures used to determine if a child is eligible for Early Intervention services under Part C of IDEA.

Assessment refers to procedures used to determine a child's needs and strengths or in the case of the family assessment, the resources, priorities, and concerns of the family related to the child's development.

So that's IDEA evaluation terminology in a nutshell. Each term refers to a different stage in the process that leads to the next: Screening-->Evaluation-->Assessment-->IFSP development.

The Purpose of Evaluation for Early Intervention

2008-05-19T20:08:00.001-05:00

You received a diagnosis from your doctor that clearly says your child has a medical condition, so what is the point of "evaluating" the child? Shouldn't everyone just skip the evaluation (since you already have a diagnosis) and start providing services to address the condition?

No.

At first glance, evaluation for early intervention services may seem like a purely administrative task--as if they don't trust your doctor and want to check for themselves. But really the purposes of evaluation are completely different from medical diagnosis. Early intervention evaluations are not conducted to 'diagnose' your child's condition.

Ignoring the family directed assessment for the time being (be sure I'll talk about it later), evaluations are conducted to answer two questions:

Does the child qualify for early intervention services?
What should we include in the child's service plan?

The first question is one of eligibility. A child (age zero to three) is eligible for early intervention if:

(a) The child experiences developmental delay in one of 5 categories (cognitive, physical, communication, social/emotional, or adaptive development). IDEA also recognizes that some medical conditions make it likely that the child will experience developmental delay even if they are not presently experiencing it; these high risk children also meet the 'delay' requirement, but in either case, the child must also . . .

(b) . . . need early intervention services because of the developmental delay. This means the delay experienced by the child (or that is highly likely to be experienced) is of a type that requires early intervention services to address the delay in addition to any medical care the child receives for their condition. Sometimes, even though a child has a medical condition, the effects of that condition are not of a type that can be addressed through early intervention.

The second question is about planning for the child's services. Once a child is found eligible, the team in charge of creating the child's service plan, the IFSP team (which includes the parents), must:

Create goals for the child's development and decide how progress toward those goals will be measured.
Select the services the child will receive and determine the frequency, duration, and location for those services.

The results of the evaluation is where the planning process begins. The child will need to be evaluated in all areas of suspected disability to identify the child's needs, create appropriate goals, and select appropriate services. Parents are themselves an 'evaluator' in that they have observed the child in more circumstances and for longer periods than anyone--they know their child and their thoughts, observations, and concerns are very important contributions that should be given significant attention in the planning meeting.

Evaluation is a crucial step in early intervention--it determines if the child needs and can benefit from services. It lays the foundation for planning and delivering those services. If done poorly, or inadequately, services are likely to be less effective and some needs may go completely unaddressed. If done well, it ensures that services are tailored to your child's needs and provides a foundation for tracking your child's progress toward appropriate goals.

Status of the Part C Regulations

2008-05-11T19:46:00.001-05:00

I have been asked on several occasions about the regulations for Part C. As you may know, on May 7th of last year, the newly proposed regulations to Part C of IDEA appeared in the Federal Register--but final regulations have yet to be released. So where does that leave parents who may be wondering about various provisions of law regarding early intervention?

Do the old regulations apply? The short answer is no. At least, they don't all apply with the same force of law as before the amendments to the statute took effect. That doesn't mean they can be ignored either. The regulations can still clarify the requirements of the statute, particularly when the statute did not change in relation to a particular regulation. On the other hand, where the statute has changed, the regulation is less likely to have any real legal weight.

To use an example, let's consider the requirement for a "timely" evaluation. The prior regulations stated that an evaluation should be conducted within two days of referral. The proposed regulations say "as soon as possible." So what is timely? Well, if the evaluation is conducted within two days, it pretty clearly meets the requirement. Considering how quickly children develop at this age, a month would pretty clearly not meet the requirement. But what if it is conducted a few days later or a week. It may still meet the requirement--but it may not. The hearing officer or court will have to determine whether a week falls within the definition of the word timely as used by the statute. The old regulations can be used to argue that it does not, but the proposed regulations may be used to argue that it does. Legislative history, policy considerations, and situational factors may also come into play in the hearing officer or court's decision.

But before feeling overwhelmed by the ambiguity of the situation, check your state law. States pass statutes that implement IDEA, and those statutes may include some clarification of their own. For example, if the state statute says that an evaluation must occur within 2 days of referral--it doesn't matter if the federal regulations ultimately provide more time. State law can place additional restrictions and requirements on schools, it just can't weaken or lessen the federal requirements.

The present state of uncertainty about some areas of the law regarding early intervention will be resolved when OSERS releases the final regulations. I am hoping (and hopeful) this will happen soon, because it will be a whole lot easier for me to explain in these posts what the law says when I have the final regulations to rely on. But many many individuals and organizations submitted their thoughts and recommendations on the proposed regulations, and the Office of Special Education and Rehabilitative Services (OSERS) held a number of public meetings to gather additional input--so its a pretty big job. OSERS has the vital, but unenviable, job of giving due consideration to these comments and, ultimately, crafting the final regulations. In the end it is more important that they are thorough than fast.

You can count on me to let you know when the new regulations come out. I'll also post on the various changes.

Wrightlaw joins the blogosphere!

2008-05-07T14:14:00.001-05:00

As part of Wrightslaw's 10 year anniversary celebration, they have started the Wrightslaw Way Blog! If you know Wrightslaw, you know their blog will make a huge impact--if you don't know them . . . take a few minutes to check out their very extensive resources (Wrightlaw).

Genetic Information Nondiscrimination Act of 2008

2008-05-06T10:34:00.001-05:00

A nearly unanimous House (414-1) and unanimous Senate (95-0) have sent the Genetic Information Nondiscrimination Act of 2008 (GINA) to President Bush, who has promised to sign the bill into law. Can you remember the last time anything passed into law with such uniform support?

The legal protections provided by GINA are an important step in improving early identification and intervention for children with disabilities. Previously, if a parent wanted to have their child screened for a genetic condition or predisposition, they had to worry about how the results might affect their insurance or even their employment. GINA addresses these concerns by prohibiting discrimination based on genetic information. Genetic information not only includes the individual's own test results, but also test results of other family members AND the "manifestation of a disease or disorder in family members of such individuals."

This last part of the definition is particularly significant for people who have siblings or extended family with genetic conditions--it means health insurance companies can't deny you coverage or increase your rates because you have a family member with an inheritable disability whether its a sibling with autism, an aunt with schizophrenia, or a parent with Huntington's disease. But, there is an exception to this new prohibition. It does not prevent an insurer from raising the rates of a policy that covers the individuals with a disability. So if your child has a disability, the family's health insurance rate can still increase--at least if you purchase health insurance on the individual market rather than getting it through your employer.

In any case, concerns about the genetic test results of a child affecting insurance and employment of parents are largely eliminated by the passage of GINA.

State of the Science Conference review

2008-04-22T08:41:00.001-05:00

Over a month has passed since we introduced the concept of wisdom-based action, the three knowledge banks (emotional well being, care coordination, and parents' rights), and--the biggest hit of the conference--the 4Rs or wisdom cards. All in all, I think the state of the science conference was a great success, although we could have used a second full day to continue discussions. I think finding sufficient time is one of the biggest challenges we face. Nevertheless, conference attendees shared a vibrant optimism about the future and the increased focus on providing information and assistance that is relevant and useful to families.

We also learned quite a bit.

We discussed how information should be provided in multiple formats for the different learning styles and preferences of families. One of the most interesting ideas was to make podcasts available by phone, since everyone has a phone.
We were given some very sound and constructive criticism on the wisdom section of the website--get to the content quicker, write less academically, and provide information in smaller bites that families can more readily digest.
Another suggestion was to start development with underserved groups; designing information resources for those who are hardest to reach creates resources that anyone can access and use.

These are just a few examples, and we have been working round the clock ever since (sometimes literally) to get the ball rolling and find ways to implement the good ideas shared at the conference. Of course, we could always use more ideas and feedback, so check out the approach and materials we discussed at the conference at our wisdom-based action microsite and tell us what you think.

State of the Science Conference

2008-03-14T00:03:00.001-05:00

Hello all. This post is a little different. This one is targeted to a very specific audience--attendees at the State of the Science conference in Washington, DC. It's a diverse group here at the conference--agency personnel, researchers, professionals, and of course, Families of children with disabilities.

So, Hello State of the Science Conference Attendees!

Pat Bauer (author of the disability news blog embedded in the sidebar) and Cnoe (author of the Disability Information and Insight blog) are also here. Cnoe's most recent post begins to fill a gap in our coverage of transition by blogging on the issue of transition and eligibility for services--a topic inspired by a post on the Erin Toes blog (Erin has a cochlear implant and is aging out of early intervention).

You are probably wondering what the conference is about or, in other words, what difference will this conference make for all these stakeholders in early intervention?

It's about a lot of things. Its about emotional support, care coordination, and parent rights. It's about the experiences of families, research synthesis, law and policy. But mostly . . . its about bringing these sources of knowledge together and putting it into action to support families in areas such as the examples given above. If you are interested in learning more, check out the new section on the Beach Center website on Wisdom-Based Action.

As for what difference it will make . . . I guess that is entirely up to the attendees, including myself and my collegues at the Beach Center. I'll give an update, and perhaps a better answer, after the conference.

Screening and Evaluation for Early Intervention

2008-03-05T22:42:00.002-06:00

Having just completed a series of blogs on transition out of early intervention, I thought it would be good to start talking about entering into early intervention. Where to start is somewhat difficult with this topic, there is so much that parents want to know when they suspect their child might need early intervention services. So, I'm going to take the easy way out and recommend a recent post by one of our recommended blogs: Early Intervention Insights.

In a post entitled Child Evaluations are a Tool for Adults, Ali-K gives a fairly detailed overview of the process of identifying when a child needs early intervention services beginning with a parent whose child was referred by a physician. Physician referral is probably the most common way that parents initially hear about the early intervention system and, as Ali-K notes, their first encounter with the complexities involved in identifying whether a child needs services and what types of services the child might need.

I also want to highlight a discussion thread on our community of practice site that began on Saturday entitled Early Childhood Evaluations: A Parent's Perspective. This thread focuses on the question of what strategies have parents found helpful in meetings on evaluation. The discussion has just started getting some good responses (plenty of time to add your two cents worth). So far a summary of the tips (from parents in the discussion) include:

Ask for a copy of the full evaluation results in addition to the summaries.
Look at the What to Expect books--they may give you an idea of what is usually considered "typical" development at this point in a child's life. But also remember the range of "typical" is very broad.
Make a list of your concerns, goals for your child, and what you think might be done to meet those goals. Prioritize your list, but start discussion at the meeting with a couple of the easier issues to get the ball rolling.
Recognize that the evaluation team will most likely discuss your child's "deficits," and prepare yourself mentally and emotionally for these discussions. They may say "deficits," but only because they are trying to identify the areas where your child could benefit from services.

Feel free to join the coversation and offer your own perspective and experience--here or in the CoP.

Early Childhood Transition REDUX

2008-02-28T13:25:00.000-06:00

Thus far, our focus has been on transition from early intervention programs to preschool programs. This can be a challenging time for parents and their children because it involves a change in services systems from those governed by Part C of the individuals with disabilities education act to those governed by Part B (See post on the ABCs of IDEA).

Posts Related to Transition to Preschool

Overview of parent roles and the requirements for a transition plan

Tips on successful IEP/IFSP meetings . . . and links to meeting preparation tips of others.

Summary of a research study on successful transition planning (includes tips from the research)

Table of basic differences between Part C and Part B of IDEA

Ever-expanding list of State Guides on Transition (programs vary considerably among states)

Or, if you challenge the proposed IEP or your child is almost 3 and doesn't have one, you may want to read this summary of 3 court decisions on transition. If none of these resources help, let me know and I'll try to post something on it.

Additional Places for Info on Transtion:

(1) Our community of practice on early childhood family support. Many of them beginning with the experience of a family . . . . and if you register (its free) you can post your own question or start your own discussion. There have been several discussions related to transition:

Ben's Story: Roadblocks to a Smooth Transition
Megan's IFSP transition meeting
Problems in finding accessible preschools

(2) Our friends in blogging--you can go to their sites from the Recommended Blog links in the sidebar. We have both professional and family blogs listed--both often have stories and valuable knowledge to share. Examples:

Cnoe's post on Transition to Early Childhood Programs

About this Blog: Redux

2008-02-28T01:29:00.001-06:00

Navigating the web and finding information that you need, might need, or are interests in, can be challenging at times. Blogs can help, but their chronological publication can also bury the posts that you would be most interested in reading beneath months of subsequent posts.

So, my answer to this problem is the Redux post.

In other words, when we post a series of blogs on a topic (such as we have been doing on transition) and the number of posts become significant, I will try to write a Redux post on the topic that provides an overview and links to what can be found related to the topic on this blog, in discussion threads on the Community of Practice site, and on the blogs that we link to. Thereafter, if I publish a new post on the topic, I will update the Redux post within a few days and republish it with the new information and link.

This will mean I go against blog tradition and change the date of the Redux so that it stays at the top of the folder for that topic even after I've added new posts. While blog purists may be offended by this off-the-cuff digression from standard blogging form, I think it will be worth it since you will see the Redux guide to each topic as the first post when you click on one of the folders. It will include links to everything in the same folder as well as any cross over topics or related issues that might be of interest.

This week, I will create the first real Redux document around our transition topic. So stay tuned or, if you are really opposed to this violation of unwritten blog law, you can give me an earful in the comments.

3 Court Decisions on Transition in Early Intervention

2008-02-22T17:47:00.001-06:00

It is not easy to understand courts’ decisions, but they provide the most issue specific source of information about the law on a particular issue. Below, we summarize and explain three cases relevant to “transition.” The first two are about your child’s right to have services continued if you challenge the preschool’s proposed IEP. The third is about your right to have your child’s plan for preschools (Part B services) prepared in a timely fashion.

Transition and “Stay Put”

Your child has been receiving what you consider to be appropriate services in early intervention. The preschool, however, wants to eliminate some of the IFSP services, reduce the frequency of other services, substitute different services, and/or take other action that you believe will impede your child’s development.

You are disappointed and frustrated at the transition planning meeting that your input is not considered. The result is that the preschool staff develops an IEP that provides less than the IFSP. You disagree and challenge the IEP in a due process hearing. While you and the preschool are involved with the due process hearing, you want the IFSP services to continue or “stay put,” but the preschool wants to use their proposed IEP.

So in plain English, the legal question is this:

Does my child have a right to continued IFSP services while I am disputing the preschool-proposed IEP?

Your Legal Argument vs. the School’s

Lawyers for parents have argued when your child is already in the service system, a preschool must continue the services your child already gets when you and the preschool have a disagreement about them. (20 USC Sec. 1415(j))—that your child has a right to “stay put” with IFSP services.

Lawyers for school boards have argued that the “stay put” provisions apply only after your child has been enrolled in preschool and an IEP has been developed. They agree that if your child was enrolled and already had an IEP, “stay put” would protect the services. But they also argue that IDEA says if your child has not yet been enrolled—is applying for admission for the first time—there is no previous IEP and no stay-put protection (20 USC Sec. 1415(j)).

What Do the Courts Say?

There are two inconsistent decisions.

Stay Put Applies: The federal court of appeals covering the states of Delaware, New Jersey, and Pennsylvania agreed with parents that the child’s IFSP services stay in place during transition. Pardini v. Alleghany Intermediate Unit, 420 F. 3d 181 (3d Cir., 2005). The court reasoned that there is nothing in Parts B or C that excludes “stay put” in transition situations. If you live in one of those states, the law is settled: The “stay put” rule applies in transition.

Stay Put Does Not Apply: The 11^th Circuit court of appeals agreed with school boards that the IFSP services do not stay in place during transition. D.P. v. School Board of Broward County, 483 F. 3d 725 (11^th Cir., 2006). It reasoned that “stay put” applies only after the child has been admitted to or is eligible to be enrolled in Part B programs. If you live in one of those states, the law is settled: The “stay put” rule does not apply.

What does this mean? It means that where you live determines whether your child has the right to “stay put” during transition.

You have stay put if you live in: Pennsylvania, New Jersey, or Delaware.
You do not have stay put if you live in: Florida, Georgia, or Alabama.
Other states are not bound to follow either decision, so these cases do not resolve the uncertainty about the stay put provision in other states. If any of you know which way other jurisdictions have gone on this issue, let us know in the comments or email me and I'll put it in the post.

Transition and Timeline for the IEP

IDEA requires an IEP to be in place for a child who is transitioning to preschool services by the time the child is 3 years old. But what happens if the school district misses this deadline and you, as the child’s parents, have to find and pay for services on your own? Does the preschool have to reimburse you for the cost of these services?

This is basically the situation that led to Board of Education of Paxton-Buckley-Loda Unit School District 10 v. Jeff and Debbie S., 184 F. Supp. 790, 2002 U.S. Dist. LEXIS 2166, (2002). The preschool failed to have an IEP ready for a child with a new cochlear implant, and the parents secured private services to ensure the child had necessary services during this critical period. The preschool refused to reimburse them for these services. The preschool recognized that it failed to meet the deadline, but it argued that a minor procedural violation of IDEA didn’t require them to reimburse parents for their decision to seek private services. The federal district court in Illinois disagreed.

The court in Jeff S. held that because it was a critical time for the child for implementing the cochlear implant, the child’s education could have been significantly impacted from the failure to meet the deadline for having a service plan. In other words, the school district was required to reimburse the child’s parents for the costs of preschool services because (a) the preschool failed to meet the deadline for creating the IEP, and (b) the failure could have had a significant negative effect on the child’s education.

So, the bottom line is that failing to meet the deadline for an initial IEP is a violation of IDEA, but it will only support reimbursement (for services the parent buys from private providers) if not having the services would have had a significant impact on the child's education.

Differences between Part C and Part B

2008-02-21T12:45:00.001-06:00

When your child is getting ready to move from early intervention services to preschool services, it is helpful to understand the differences between the two programs. The following chart gives a basic overview of the differences.

A Comparison of the IDEA Part C and Part B

Early Intervention Program
IDEA—Part C

Preschool Special Education Program
IDEA—Part B

Agency
Lead Agency designated by State

State Dept. of Education

Ages of Children Served

Children, ages birth to three years of age

Children, ages three through twenty-one years

Eligibility Criteria—State MUST serve

Early intervention services must be provided to:
·      Children experiencing developmental delay, or
·      Children with a condition that is highly likely to result in developmental delay
. . . AND by reason thereof, need early intervention.

Special education must be provided to children who fit 1 or more of the following categories of disability:
Mental retardation,
A hearing impairment (including deafness),
A speech or language impairment,
A visual impairment (including blindness),
A serious emotional disturbance (referred to in this part as emotional disturbance),
An orthopedic impairment,
Autism,
Traumatic brain injury,
An other health impairment,
A specific learning disability,
Deaf-blindness, or
Multiple disabilities
. . . AND by reason thereof, need special education.

Eligibility Criteria—State MAY choose to serve

Early Intervention services may (at the option of the state) be extended to:
·      Children who are at-risk of developmental delay.

Special education may (at the option of the state) be extended to:
·      Children age 3-9 (or some part of that age group) who experience developmental delay

Individualized Plans

Individualized Family Service Plan (IFSP)

Individualized Education Program (IEP)

Available Services

Early intervention services for child and family to meet the developmental needs of the child and increase the family’s ability to meet the needs of their child (examples listed in regulations).

Special education and related services determined appropriate to meet the educational needs of the child (examples of services listed in statute), and allow the child—to the maximum extent possible—to participate in the general education curriculum.

Family Involvement

·      Participation on all teams making decisions about the child’s individualized plan for services
·      Receive services to improve the family’s ability to meet the needs of their child with a disability

·      Participation on all teams making decisions about the child’s individualized plan for services

Location for Services

Natural Environment—to the maximum extent appropriate, the child is served in environments that are normal or natural for a child of that age (including the home and integrated child care settings).

Least Restrictive Environment—to the maximum extent appropriate, the child receives services and participates in the general curriculum, non-academic, and extra-curricular activities alongside peers without disabilities.

Costs for Services

States may charge for services (e.g. sliding scale), but must ensure no one does not receive services because of inability to pay.

All services must be provided for free.

Research Highlight: Transition planning

2008-02-18T17:12:00.001-06:00

Transition Planning from Early Intervention to Preschool

Rous, B., Myers, C.T., & Stricklin, S.B. (2007). Strategies for supporting transitions of young children with special needs and their families. Journal of Early Intervention, 30(1), 1-18.

Bottom Line: Practitioners, administrators, trainers/faculty/ researchers, and families reported the strategies they recommend for successful transition. The two most important are interagency collaboration and effective transition practices. The article elaborates on both of these strategies.

Tips from the research

When your child becomes two years old, ask the early intervention staff to identify their typical practices and activities for preparing parents to be partners in planning transition. Here are some useful questions and follow-up requests.

What strategies do you typically use for both the staff and families? Please let me have your written materials and guidelines.
What are the applicable state and local policies? Please let me have a copy of them or tell me where I can get a copy.
Is there a transition planning specialist(s)? Please give me the person’s name and tell me what their role is.
What other agencies are involved in transition? Please identify them and the key contact person in each agency.
Will you have interagency meetings about transition during the next year? Are the meetings open to families? Please tell me when they are and what I may expect if I attend.
How to do you align your services with those of the agency(ies) to which my child probably will transition? Please give me some examples of how you and I can plan to continue my child’s services.
How I can be an effective partner in the planning conference? Please tell me what other family members have done to be effective.
How can I learn about preschool programs my child might attend? Please tell me how other parents have informed themselves about preschool programs.
How can all of us be partners for successful transition? Please tell me what other parents did to be good partners with you.
Are there resources about my child’s disability that I should read to be an effective partner in transition? Please let me know what they are and whether you have any you will share with me.
What other resources might inform me about transition and being an effective partner? Please tell me about community or neighborhood resources and parent support groups.

Key Findings

Practitioners, administrators, practitioners, trainers/ faculty/researchers, and families identified two major strategies for effective transition: interagency collaboration and effective practices.

Interagency collaboration refers to supportive infra-structure, relationships and communication, and continuity and alignment.
Supportive infra-structure: A supportive infra-structure has strategies to guide the transition process (for example, written materials, forms), transition policies at the state and local levels, personnel responsible for transition planning (for example, a service coordinator or transition coordinator), and support from administration.
Relationships and communication refers to interagency relationships (for example, participating in meetings and having dialogue between agency staff) and cross-program communication and collaboration (for example, discussion across agencies of broad transition issues).
Continuity and alignment refers to the relationship between the sending and receiving programs. Strategies focused on continuity (for example, using developmentally appropriate practices, having realistic expectations) and alignment (for example, transparent connections between program guidelines and curricular expectations).
Transition practices include child, family, staff, program, and community considerations. There are four categories of practices: preparation of families and children for transition, program visitation, instructional activities, and use of community resources.
Preparation of families and children for transition refers to families’ participation in meetings (for example, having opportunities to meet staff and to learn about different classrooms and programs), sharing information with families as part of transition planning (for example, providing information on program options and what happens during the transition planning process), and providing specific workshops designed for parents.
Program visitation consists of family, child, and staff visits to programs the child might attend.
Instructional activities consist of program-wide activities for children and families (for example, home visits and formal orientation events) and child-specific activities conducted in an individual child’s environment designed to prepare the child for a new setting (for example, learning to ride a school bus).
Community resources are those that help parents understand their IDEA-related rights (for example, parent resource centers and disability networks), community and neighborhood resources, and family support groups.

Method

Focus groups consisted of 43 individuals, including practitioners, administrators, trainers/faculty/researchers, and families representing 18 states.
Focus groups occurred at national or state conferences.
There is no information about the racial/ethnic and socioeconomic characteristics of the participants.
Five questions were shared with participants in advance and guided the focus groups.
Focus groups were recorded and transcribed verbatim.
Thorough procedures were used for coding the data and ensuring its credibility.

Related Publications

Hanson, M.J., Beckman, P.J., Horn, E., Marquart, J., Sandall, S.R., Greig D., & Brennan, E. (2000). Entering preschool: Family and professional experiences in this transition process. Journal of Early Intervention, 23(4), 279-293.

Lovett, D.L., & Haring, K.A. (2003). Family perceptions of transitions in early intervention. Education and Training in Developmental Disabilities, 38(4), 370-377.

This research was conducted in collaboration with the Beach Center on Disability. It was funded by the Rehabilitation Research and Training Center on Families of Children with Disabilities of the National Institute on Disability Rehabilitation and Research (H133B30070) and private endowments. Permission granted to reproduce and distribute this research brief.

Please credit the Beach Center on Disability.

Research Preview: Transition to kindergarten and family quality of life

2008-02-18T12:14:00.001-06:00

Part of making sure children come to school ready to learn means making sure that families have the supports they need to provide their children with the best possible environment to develop and grow. In this Research Brief, we are reporting some preliminary findings from a survey of Kansas families whose children were participating in the Kansas Department of Education's (KSDE) School Readiness Study. We wanted to know how families of children entering school with a disability might differ from families of typically developing children. We also wanted to know whether the services they received during their child's preschool years had an impact on their overall quality of life.

Summary of Key Findings

KSDE collected a Parent Report Survey from 1806 parents of children in the School Readiness Study, which included 326 families whose children had IEPs. The Parent Report asked parents how often they engaged in educational activities with their child (e.g., reading, going to the library, etc.). Of these parents, 696also participated in our Beach Center Survey and provided information about their access to health care and health insurance as well as their child care experiences, and completed the Beach Center Family Quality of Life Survey. A total of 112 of these parents indicated their child had special needs, and they also completed a Service Adequacy Inventory, describing disability-related services they and their child had received in the year prior to entering kindergarten. Following are some key findings from both these data sources:

Families of children with special needs tended more often to be employed full-time, but tended also to have lower incomes, than families of children who were not identified with a special need.
Overall, families who reported that health care costs and paying health care bills was "a big challenge," tended to have a lower family quality of life.
Families of children with special needs tended more often to have their children enrolled in Kansas Health Wave or other public sources of health insurance, than families of children with no special needs. However, fewer adults in these families tended to have health insurance coverage for themselves, than in families of children with no special needs.
A smaller percentage of children with special needs had spent the previous year in preschools or relative care, and more often were in unlicensed care, than children without identified special needs.
The 112 families of children with special needs indicated one or more needs for their children. The majority of these families reported that they believed their children had received enough of those services during the year previous to entering kindergarten.
In contrast, the majority of the 112 families indicating a need for family-oriented supports said they had NOT received enough of those services during the previous year.
For these 112 families, their overall mean service adequacy ratings were significantly related to their family quality of life.
Comparing the 326 families with IEPs in the KSDE study to those who entered kindergarten without an IEP, more parents of children with IEPs reported reading to their child daily, but significantly fewer of these parents reported regularly taking their child to activities in the community (libraries, zoos, sporting events).

A Closer Look at Family Quality of Life

	Special Need	No Spec. need
Interaction	4.3	4.4
Parenting	4.3	4.5
Physical	4.3	4.5
Emotional	3.9	4.0
Supp. For Dis.	4.5	-----

The Beach Center Family Quality of Life Scale resulted from a careful program of research to hear what families say about the meaning of quality of life, and to design and test a measure that captures that meaning and also is convenient and reliable to use. The Beach Center Family Quality of Life Scale contains 25 items divided into five domains or sub-scales: Family Interaction (e.g., my family enjoys spending time together), Parenting (e.g., My family members help the children learn to be independent), Emotional Well Being (e.g., my family has the support we need to relieve stress), Physical/Material Well-Being (e.g., My family has a way to take care of our expenses), and Supports for the Person with a Disability (e.g., my family member with a disability has support to make friends). In this study, only families who indicated their child had a special need were asked to complete the last sub-scale.

A Closer Look at Services

The Services Inventory was based on the list of services mentioned in the Regulations for Part C of IDEA, supplemented by other services provided by Kansas programs (e.g., respite care). We asked parents to rate which of these services they or their child needed (yes/no). For those services they said they needed, we asked parents to rate the amount of services they were getting (none, some, enough). The table below shows the number of parents (Total N = 112) who said they or their child needed a service, and of that number, the number who said they were getting "enough" of that service. In all but three of the child services (counseling, behavior support, self-care training), the majority of those needing them said they were getting enough. In the case of family services, however, the majority of parents needing services said they were NOT getting enough of those services.

Child-oriented Services	# Needing	# Getting Enough	Family-Oriented Services	# Needing	# Getting Enough
Assistive technology	12	8	Respite care	8	3
Health services	66	53	Information about disabilities	19	10
Hearing and/or vision services	31	22	Information about legal rights	12	6
Physical, Occupational therapy	19	10	Information about services	12	6
Speech/Language services	72	52	Counseling	18	6
Special education services	54	38	Support groups	8	1
Counseling/psychological services	24	12	Sibling support	6	--
Behavior support	32	13	Parent or family training	13	1
Transportation and/or mobility	21	13
Service Coordination	13	8

This research preview is based on preliminary analyses of data collected by the Beach Center on Disabilities in partnership with the Kansas Department of Education. The Beach Center research team was under the supervision of Jean Ann Summers and Janet Marquis, Co-Research Directors of the Beach Center on Disability, and included George Gotto, Nina Zuna, Kandace Fleming, and Pam Epley. The KSDE School Readiness Study is under the supervision of Gayle Stuber and Renee Patrick. The Co-Principal Investigators of the Beach Center are Ann and Rud Turnbull. The Beach Center on Disability is funded by the National Institute on Disability and Rehabilitation Research and an Endowment from Ross and Marianna Beach. For more information contact the Beach Center on Disabilities, 1200 Sunnyside Avenue, Room 3136, Lawrence, KS 66045-7534 ″ 784 863-7600; beachcenter@ku.edu; www.beachcenter.org.

Video: Overview of IDEA by Dennis McAndrews

2008-02-14T15:40:00.001-06:00

Dennis McAndrews Esq. has created several videos on Special Education law. Here's an example. It is about 11 and 1/2 minutes long. More are available through Google Video.

Note: this video does not constitute legal advice nor create an attorney-client relationship between the creators and the viewer.

Early Childhood Transition--State Guides

2008-02-14T12:09:00.001-06:00

While federal law requires all state early intervention programs to have certain characteristics, it allows each state to work out many of the details. This is why transition programs in each state differ significantly. Thus, some of the best resources for navigating the transition of your child from Part C to Part B services are state specific. Here are a few examples:

New York

New York Parents' Guide: Transition in Early Intervention
New York Parents' Guide: Parents Rights in Early Intervention
Advocates for Children in NY's guide to early childhood transition
Or, if you are looking for something with very detailed information, you can read this memorandum. It is detailed, but not written to be very family-friendly.

Washington

A short early childhood transition brochure
A timeline for early childhood transition
Additionally, I would recommend looking at the transition and parents' rights sections of their guide to early intervention.

Massachusetts

Best Practices in Early Childhood Transition

Indiana

Parents' guide to transition to early childhood special education

Ohio

Guidelines on transition, a transition document checklist, and Countdown to Transition (which includes a timeline and checklist) can be downloaded by clicking on the links on the transition page of the Ohio Dept. of Education.

Texas

The lone star state has a transition page with links to a transition guide and checklist.

Georgia

Steps for Success is a guide to early intervention transition in Georgia.

Rhode Island

A comprehensive guide on transition from early intervention in Rhode Island can be found at the Paul V. Sherlock Center Website.

North Dakota

The Dept. of Human Services and the Dept. of Instruction worked together to produce a guide for understanding early childhood transition in North Dakota.

Oklahoma

This guide to transition comes from the Oklahoma Dept. of Education.

Oregon

The state Dept. of Education in Oregon has this webpage with links to information on their early intervention program.

I'd love to expand this list, so if you have other state specific resources on early intervention/childhood transition, email them to me or post them in the comments below. For those of you who do not live in any of the states we currently have listed, let me recommend a few generic sources:

Non-State specific information

NECTAC's transition page has a very comprehensive array of resources on early intervention and Part C of IDEA.
Circle of Inclusion has a bunch of useful transition forms to download to help you and the IFSP team develop the transition plan. They are a bit dated (2002), so don't rely on them for legal information (since the law changed significantly in 2004)--but they are good planning tools.
You might also find it useful to read our blog tips on preparing for planning meetings or the tips of others.
Finally, if you are looking for something more substantial and comprehensive, we can recommend Beth Rous' book--Tools for Transition in Early Childhood. It is available for $29.95 from Brookes publishing.

I hope one of the above resources on transition meets your needs, but if not or if you are looking for one-on-one information from someone who is knowledgeable and has personal experience navigating the same state system you must deal with--you might want to find a parent to parent program in your area.

Transition in Early Childhood--parent rights and roles

2008-02-13T18:34:00.002-06:00

Question

My child is turning three years old. What are my rights in transition planning?

Law & Policy

Under IDEA, when a child turns three years old, he or she ages out of Part C services and ages into Part B (preschool) services. Many of the key decisions about the transition of a child from Part C to Part B are made in an IFSP meetings, particularly those shortly before the child turns three (the transition conference). To help ensure that the best decisions are made for their child’s transition, parents should know their rights with respect to transition planning and know the requirements for a transition plan

Parent Rights in Early Childhood Transition Planning

IDEA gives the IFSP team as a whole—and not any one member—the authority to make all decisions about the child’s transition plan. As members of the child’s IFSP team, parents have the right to be involved in all decisions regarding the child’s transition to preschool services.¹
Additionally, parents may withhold consent to any service offered in the IFSP without losing other services.²
In Part B, parents must accept or reject the IEP as a whole.³

Requirements for a Transition Plan

While the exact policies and procedures required for early childhood transition planning differs among states, they all require transition planning as part of the IFSP.⁴
Transition planning in the IFSP must consider transition services needed by the family.⁵
The IFSP must also include a description of appropriate transition services,⁶ identify the person who will implement the plan and coordinate the child’s transition,⁷ and include the steps necessary for the child to exit the Part C program and enter preschool or receive services.⁸
The early childhood agency (EC agency) must notify the child’s local school that the child will soon be eligible for Part B services,⁹ although some states may require parental consent (or opportunity to object) for referral for special education services.¹⁰
If the child will attend preschool, the EC agency must set up a transition conference—at least 90 days before the child would become eligible for preschool—with the school and parents to discuss services.¹¹
If the child will not be eligible for preschool, reasonable efforts must be made to set up a meeting between the parents and any relevant service providers.¹²

Footnotes

s 1436 (a)(3)
§ 1436 (e)
§ 1414 (a)(1)(D)
§ 1436 (a)(3)
§ 1437 (a)(9)(A)(i)
§ 1436 (a)(3)
§ 1436 (d)(7)
§ 1436 (d)(8)
§ 1437 (a)(9)(A)(ii)(I)
OSERS letter to Mary Elder, 2004
§ 1437 (a)(9)(A)(ii)(II)
§ 1437 (a)(9)(A)(ii)(III)

A New Blog by a CoP member: Disability Info and Insight

2008-02-06T21:08:00.001-06:00

I'm very happy to announce that a new blog was recently launched into cyberspace by a fellow member of the Early Childhood Family Support Community of Practice (CoP). Cnoe has been a wealth of insight and information in our CoP discussions, so I highly recommend checking out his blog.

His first post "Where we are" responds to a question I borrowed from Dr. Martin Luther King in another blog post "The Wisdom of Martin Luther King and Disability Equality."

His second post, Highly Qualified Teachers, discusses in plain language the often confusing requirement for schools to hire instructors who meet the 'highly qualified' standard.

Like me, Cnoe is new at this blogging business, so be sure to give him
suggestions and feedback.

Better yet, teach by example. Tell us about your own disability blog

or start one. If you want help, I'd be happy to get you started.

CoP Panel Discussion: Care Coordination

2008-01-29T15:53:00.001-06:00

The Early Childhood Family Support community of practice has launched a new panel discussion on Care Coordination, or in other words, seeking and securing quality care for children with disabilites.

To take a look or contribute to the panel discussions threads go to: Panel on Care Coordination

Featured participants in the panel discussion are:

Erin and Will Crapser are the parents of three children. Their daughter, Morgan, has been identified as medically fragile and has a cognitive disability. She has had two heart surgeries, three stomach surgeries, three elbow surgeries, countless ear tube procedures, plus other hospitalizations. At 14, she is tube fed due to Eosinophilic Enteropathy, a rare condition. Erin has worked as an educator with the Parents As Teachers program in Kansas City KS, a consultant with her state's Infant-Toddler program, and as a trainer for foster and adoptive parents.

Vicki Miller, a social worker for more than 30 years, currently works at the Center for Child Health and Development (CCHD) at the Kansas University Medical Center providing clinic coordination and case management for Children with Special Health Care Needs (CSHCN). She also coordinates outreach clinics across the state.

Teri Lavenbarg, pediatric nurse practioner, has worked for more than 20 years with a passion to see seamless coordination of care for children and their families. She has served with the Visiting Nurses Services of Maternal-Child Health and Kansas City MO's Children's Mercy Hospital Home Care program. She is currently the coordinator for Cerebral Palsy, Seating and Mobility, and Urology speciality clinics at the Kansas University Medical Center.

Roundup--IEP/IFSP meeting preparation

2008-01-24T08:31:00.001-06:00

I've written about IDEA and planning meetings in a couple of posts now, but I was not the first to cover these topics, so its time to give props to other bloggers and websites for braking the ground before me. Here are some of the best articles and posts I've found:

10 Tips to Parents to Improve Participation in IEP meetings. Randy Chapman provided 10 tips for those heading into a meeting a month before our blog went online.

How to Prepare for Your Child's IEP Meeting. Kristyn Crow's contribution to IEP prep will have been on the web for two years come March.

Preparing for IEP meetings. Pat Howey over at Wrightslaw gives advice on how to provide information and share concerns at a meeting. He also has an article asking, "Can the IEP Team Prepare a Draft IEP before an IEP meeting?" Of course, Wrightslaw includes many other articles on IEPs (check out their IEP page), its a good place for parents who want to learn to be an effective advocate for their child.

Preparing for an IFSP Meeting. Answers 4 Families provides one of the few 'prepare for the meeting' articles that focuses on IFSPs instead of IEPs--although most of the IEP meeting advice applies to both types of meetings. Another list of IFSP meeting tips can be found at 4 My Child.

Mothers from Hell 2 blog provides Advocacy Tips for Meeting with School or District Officials. I like this one a lot because it provides tips for before, during and after the meeting.

I also found some interesting blogs that discuss frustration with draft IEPs (or at least the way one was used in their meeting). I'm going to add some quotes and cites to these in the post on draft IEPs below.

The “Team” made a Draft IEP/IFSP for the IEP/IFSP Meeting

2008-01-23T23:27:00.001-06:00

According to IDEA, parents are full members of the teams that create their child’s individualized plan for services. So parents are sometimes surprised when other members of the team create a “draft” of the plan before the team has even officially met. What are the problems with using a draft? What are the benefits? Is it legal?

I took a quick look at research, knowledge from experience (others, not mine), and the law to see what I could find out.

BOTTOM LINE:

It is legally permissible to create a draft IEP/IFSP in advance of a planning meeting, and a draft may be helpful for both parents and school personnel. It can outline the issues and provide a starting point for discussions. But, it should be clear that it is a draft and not a final plan. Parents must also have an opportunity to read the draft and prepare comments before discussion. A draft should not be used to limit options or otherwise restrict participation of parents in discussions or decisions regarding their child’s individualized plan. Parents should not be asked to sign an IEP/IFSP that they have not had a chance to examine closely.

RESEARCH:

We didn't find any research on the effect of bringing a draft to a planning meeting on parent participation, satisfaction with the IEP, or impact on the child’s education. But if you know of any related research, let us know.

KNOWLEDGE FROM EXPERIENCE

Real Stories:

We don't have a real story in the Beach Center CoP on this topic--but if you have one, we'd love to hear it.

Tips & Quotes

“A draft IEP, if used correctly, can actually be a tool in writing the IEP. It provides input and ideas to start the ball rolling. It should almost never be taken as is and written into the formal IEP. The important thing here for parents to be aware of is not only should you request a copy of the evaluation report five days prior to the IEP team meeting, you should request a copy of any draft IEP(s) and service provider notes.” (Comment by Stephanie)

Send in your own tips (email or comments), and if we like them, we'll put them in the document.

LAW AND POLICY

Statute and Regulations

IDEA does not discuss bringing a draft to the IEP meeting, but § 1414(d)(1)(B) includes parents as members of the IEP team and gives the IEP team (and not solely the LEA or the Parent) the authority to create the Individualized Education Program for the student (§ 1414(d)). The IEP team must, in creating the IEP, consider the concerns of the parents for the education of their child (§1414(d)(3)(A)(ii)). IDEA also requires parents to be members of any group that makes decisions on the educational placement of their child (§ 1414(e)). After the annual meeting has been held, the parent and school may agree to amend or change the IEP without convening an IEP meeting (§1414(d)(3)(D)). Link to § 1414.

Official Guidance

“With respect to a draft IEP, we encourage public agency staff to come to an IEP Team meeting prepared to discuss evaluation findings and preliminary recommendations. Likewise, parents have the right to bring questions, concerns, and preliminary recommendations to the IEP Team meeting as part of a full discussion of the child’s needs and the services to be provided to meet those needs. We do not encourage public agencies to prepare a draft IEP prior to the IEP Team meeting, particularly if doing so would inhibit a full discussion of the child’s needs. However, if a public agency develops a draft IEP prior to the IEP Team meeting, the agency should make it clear to the parents at the outset of the meeting that the services proposed by the agency are preliminary recommendations for review and discussion with the parents. The public agency also should provide the parents with a copy of its draft proposals, if the agency has developed them, prior to the IEP Team meeting so as to give the parents an opportunity to review the recommendations of the public agency prior to the IEP Team meeting, and be better able to engage in a full discussion of the proposals for the IEP. It is not permissible for an agency to have the final IEP completed before an IEP Team meeting begins.” (Vol. 71, No. 156, FR 46678)

Court Decisions

If parents are given a meaningful opportunity to participate as members of the IEP team and in the IEP formulation process, the development of assessment reports or even drafts of an IEP by the school prior to the IEP meeting will generally not violate IDEA (N.L. v. Knox County Sch., 315 F.3d 688 (2003); Fuhrman v. East Hanover Bd of Educ., 993 F.2d 1031 (1993))—even if the draft IEP is written only by one member of the IEP team--as long as members of the team have an opportunity to discuss and amend it (Hampton Sch. Dist. v. Dobrowolski et al., 976 F.2d 48 (1992)).

**If you want to help us fill any gaps in this post--great. I've heard parents talk about being given a draft (and being upset by it), but I don't have any stories and few comments. Post a reply or email me if you want to share your own story, experience, or research on the issue.**

The Wisdom of Martin Luther King and Disability Equality

2008-01-20T12:32:00.001-06:00

It would be difficult to over-estimate the importance of Dr. King’s influence on disability rights and advocacy. His dream of equality was contagious, and his words and deeds resonated with persons with disabilities and their families, giving hope and direction to their efforts to secure their Constitutionally guaranteed right to live, learn, work, play and participate as equal members of society. We can honor his memory by remembering his wisdom, today and everyday. Here are a few quotes, words of Dr. King that I believe are as important today as the were when he spoke them and as important for disability advocates to remember as those who still strive to achieve the racial equality of his dream.
Two quotes from Dr. King, that to me, seem of particular significance to disability equality:
“When the architects of our republic wrote the magnificent words of the Constitution and the declaration of Independence, they were signing a promissory note to which every American was to fall heir. This note was a promise that all men would be guaranteed the inalienable rights of life, liberty, and the pursuit of happiness.” (I Have a Dream)
“I have the audacity to believe that peoples everywhere can have three meals a day for their bodies, education and culture for their minds, and dignity, equality and freedom for their spirits.” (Acceptance of the Nobel Prize)
But perhaps most relevant to our current efforts, Dr. King boldly posed the question at a speech in St. Louis "Are we really making any progress?" In his speech at the Freedom Rally, Dr. King recognized the dangers of answering this question with extreme optimism or extreme pessimism—because both lead to inaction. The optimist fails to act because the need does not seem great enough; the pessimist because such action seems futile. The disability rights movement has made enormous progress, particularly in the last 30 years, and we should celebrate these successes. But we must also recognize the barriers that continue to separate families of children with disabilities from their communities, the enormous gap between rights “on the books” and rights “on the street,” and the attitudes and perceptions that continue to foster and drive discrimination against those in our society who are most vulnerable to invidious treatment. Finally, we must look to the future—envision a better world, have the “audacity” to believe we can achieve it, and continue the hard work of making it happen.
This is how the Wisdom of Dr. King speaks to me about disability and equality. Share your own thoughts and perspectives on Dr. King's wisdom and disability equality in the comments below.

Tips: How to get the most out of IEP or IFSP team membership

2008-01-14T11:05:00.001-06:00

An IEP or IFSP is the central service plan for a child with a disability. It lays out the child's strengths and needs, what services the child will receive, how much of each service, where services will be provided, goals and expected progress, and how those goals will be measured. Thus, you would be hard pressed to name any single activity more important to success for a child with a disability than IEP or IFSP creation. Parents are full members of the IEP/IFSP teams and have the right to participate in all decisions. But having a right to participate isn't the same thing as being an effective team participant. So here are a few tips for parents:

(1) Learn about the process and your role in it. Empowerment begins with knowledge. Knowing what your roles, rights, and responsiblities are as a member of the team will help you secure the respect of other team members and set the foundation for mutual exchange of expertise and information. There are significant free resources available in print, online, and in the form of trainings. Parent training & information centers and parent to parent organizations are great places to start.

(2) Assert, recognize, and exchange expertise. Parents are experts on their child. Professionals are experts on methods for evaluation and services. While I would encourage parents to learn as much as they can on their own about their child's disability and available treatments, often time and resources limit the ability of parents to do so. Similarly, while every professional should try to really get to know the individual children they serve, their opportunities to do so are often limited. So parents need to help professionals understand their child and professionals need to actively help parents understand their child's disability and various services that are used to address their needs (not just the one that they want to provide). Parents should feel confident in expressing their own opinions, and also both recognize the expertise that other team members have and learn from them.

(3) Prepare for the meeting. Organize your thoughts and think about what issues are most important to you. Think out how you will communicate your thoughts on these issues and try to base your thoughts on observations, outcomes, and other convincing evidence. If the evidence convinced you of the importance of an issue or the effectiveness of an approach, it may well do the same for others. If not, they will still need to explain why they do not share your view.

(4) Actively participate in the discussions. Your membership on the team won't be fruitful unless you share your knowledge, expertise, and opinions. If you don't understand part of a discussion, don't be afraid to ask others to explain it. Share your ideas, doubts, and hopes with the group; let them know your expectations. Do not feel rushed, or let others rush you or bypass you, in the conversation. Your perspectives must be considered and that should include giving you the necessary time and background information to be able to form an opinion on any matter discussed that is important to you. But be sure to focus on what issues are most important to you--don't make every minor decision a battle. Be clear about your expectations, request what you want, and ask why other team members believe as they do or how you will know months from now if the decisions made were the correct ones.

(5) Be Cool, Calm, & Collected. Getting angry, holding grudges, digging up past offenses, or other negative behavior directed at other team members is rarely an effective method of getting what you want. It alienates people and if you ever have to go to a due process hearing it could be used against you. Smother those that frustrate and aggrevate you with polite, well-reasoned responses that focus on the present not the past--it will garner respect, keep the focus on what is going to be done, and increase you chance of getting support from other team members.

(6) Keep a Detailed Record. It is very important to keep a good record of all communications and discussions with school personnel and other team members, whether inside or outside of a formal meeting. A good record should include dates and times, who was present, what was discussed, any disagreements that occurred, any decisions that were made, what you basically said or presented, and your overall thoughts. Similarly, you should date and keep every piece of paper the school sends in a file and a dated copy of anything you send to them. Keeping a good record prepares you in case any disputes arise, and not only increases your chances of winning in due process, it reduces the liklihood that you will ever have to go to due process.

(7) Compromise and Accept Success. IDEA does not guarentee maximum benefit for the child, full inclusion, or unilateral parent decision making power. You need to understand the limits of rights as well as how to asset them. Conflicts and differences of opinion are bound to occur, and building a trusting partnership sometimes requires compromising on what you would prefer if there is another acceptable alternative preferred by others (I don't suggest accepting something that you believe will negatively affect your child). When you show you are willing to try something out that you do not think is the best approach, you can very reasonably ask for some way to verify the success of the approach (in the case of a level of services) or movement toward what you would prefer (such as increasing ability to be in a less restrictive placement later on). Remember not to derail what substantially gets you what you want because of lesser issues or details.

There are probably other suggestions for having a successful IEP/IFSP team experience--feel free to share them in the comments below.

A Parent to Parent story: Catherine and W.C. Meet Jean

2008-01-02T09:31:00.001-06:00

When I held our beautiful boy in that hospital room after the neonatal specialist confirmed the diagnosis of Down syndrome, I felt lost and overwhelmed. We had no knowledge of whether he was physically healthy, and we had no previous experience with an infant with special needs. The nurse gave us a stack of literature in a folder. As we read, we began to wonder: How serious would our son’s delays be? Would he be excluded by other people? Would he feel left out? Would people think he was capable of less than he actually was? Would his friends, his teachers, and others accept him with a clean slate? All these thoughts, emotions, and questions flooded our minds.

We had friends come by with words of encouragement and hugs and kisses. It was the strangest sensation that even though we were feeling lost, none of these kind visitors could give us a road map with directions for navigating through this. What we really needed was a personal guide—someone who once was as lost as we were now feeling. And that is what Jean was to us.

How did we connect with Jean? A neonatal specialist who knew about The Family Connection of South Carolina asked us if he could contact them on our behalf. Because the neonatal specialist had met with The Family Connection staff and heard stories about families who had been matched, he had an understanding of parent to parent support and believed in its importance. He also knew what to do to make a referral on our behalf—first obtain our permission and then call The Family Connection. Not knowing what to expect of this referral but at the same time looking for anything we thought might make our lives easier, we gave our approval. The Family Connection found a match for us that day.
Although we didn’t realize it at the time, the process that The Family Connection used to match us with Jean was a careful one. When the neonatal specialist called The Family Connection, he spoke with the referral coordinator and shared general information about our family—Karl was our first child, he had Down syndrome but there were no other medical issues, W.C. and I were in our thirties and had careers, and we both wanted to talk to another parent who had a child with Down syndrome. The referral coordinator used this information to check the Family Connection database of trained supporting parents to find the best match for us. Jean called our hospital room later that day. She introduced herself to us as a support parent and told us that she had a son who had Down syndrome. She asked if she could stop by. Although it was the end of a long day and we weren’t sure that we wanted to meet her, we knew that she had experienced a day like ours when her son was born. That made her different from the others who had come to visit, and that made the difference.
When she came I remember acting cool toward her—after all I didn’t know this woman. Could she help us? She looked normal, but how could she be? Yet I know on that day I had more in common with this woman than with any of our other visitors. She remembered the confusion, the fear, the loneliness, and the sense of being lost. And yet she knew her way around.
Jean briefly told us about her son, who was 7 years old. We asked about his birth, his life, and his future. She described him as quick, active, and a lover of T-ball. She showed us pictures, and everyone looked happy. For the first time we had hope that our family could go on and do things that typical families do.
When Jean left she promised to give us a call in a day or two to see if there was anything she could do. She left us her telephone number in case we wanted to call her. She called us several times to see how we were doing. It seemed as though she would call at the right time—like the day we got Karl’s official diagnosis from the geneticist. She listened and understood. That was what we needed.
Over the next several months, our appreciation of Jean and her family grew. Jean continued to encourage us through her telephone calls and visits, and she helped us connect with the organizations that could provide Karl with the early intervention services that he needed. Over the course of the last several years, we have had at least 30 contacts with Jean. Now that Karl is 5, we don’t connect with her as much. But we know that she is a telephone call away.

This story was originally published in The Parent to Parent Handbook.

Parent to Parent programs

2007-12-27T15:22:00.001-06:00

There is nothing quite like talking with someone who has been there--someone who knows their way around, the language, and how to get things done. It's true when you travel, but perhaps even more true when you have a child with a disability. Parents who have had to learn about their child's disability, available services, their rights under the law while dealing with providers, paperwork, processes, and procedures become true experts in how to navigate the disabilty service system.

Parent to parent programs tap into this expertise by matching parents who are seeking assistance with an experienced and trained 'Support Parent' who can offer both information and emotional support. For more information on Parent to Parent programs, I highly recommend:

Parent to Parent USA--a national non-profit organization dedicated to supporting state parent to parent programs. You can find out about parent to parent programs in your state at their website.

Parent to Parent Programs: A resource for parents and professionals is a good article (available as research highlights or full article) for learning more about the types of services and supports provided by parent to parent programs.

Guidelines for starting a Parent to Parent Program is a short tipsheet on starting a parent to parent program in your area. If you want something more in-depth look at the next listing:

Developing and expanding a statewide Parent to Parent Program is a user-friendly and practical guide for developing state-wide parent to parent groups. It is based on the experience of directors of parent to parent programs throughout the country.

Finally, if you want to know what difference parent to parent programs make, you can read A multi-site evaluation of Parent to Parent programs for parents of children with disabilities.

If I missed a must-know-about resource on parent to parent programs, please, post it in the comments. Or if you have a question about parent to parent programs, let me know and I'll see if I can answer it or find someone who can.

Survey Completed. New Survey Question?

2007-12-24T12:34:00.002-06:00

Our prior survey asking what you wanted most to see on this website was basically a five-way tie. You want it all! Ok, then we will continue to try to post a little of each: research summaries, real stories, tips, news commentary, etc. I'll put up another survey in the next few days. It will likely be on parents rights and what kind of resources you most need (info about the law, where to go to get help, etc.) . If you have any suggestions as to what I should include in the survey (the possible answers) put them in the comments below this post and I will put them into the question when I put it up.

A lot of us are on vacation so posting has slowed, but it will pick up again in the new year. You can count on it.

Happy Holidays

IDEA and early childhood: the Part A, B, Cs

2007-12-17T16:20:00.002-06:00

A recent reader of the blog pointed out that I had posted about IDEA without clarifying what ages of children it applied to. So, by way of apology for my oversight, here is a quick reference:

Part A of IDEA generally applies to all children regardless of age (so both infants/toddlers and preschool age).

Part B of IDEA applies to preschool and school-age children--beginning at age 3 (or a short time before if it is an initial evaluation)

Part C of IDEA applies to early intervention services for infants and toddlers, from birth to 3 years.

I'm going to adjust the labels on the post to reflect the division between B and C, so you can easily find information relevant to your child's age group or the age group you are interested in. I'll also try to mention it in each post.

Please keep sending suggestions to improve this blog.

Oh, and thanks again L.P.

Discipline, IDEA, and suspension for not more than 10 days

2007-12-17T08:48:00.002-06:00

Update! Check out this free IDEA online discipline tool!

The discipline provisions of the individuals with disabilities education act are some of the most commonly misunderstood provisions in special education law. While most of the questions I receive come from parents of school age children, I have also had inquiries from parents of children in preschool (ages 3-6). So, I've decided to clarify some of the provisions in a series of posts--this one discusses requirements related to suspending a student for 10 days or less.

Is it part of a pattern? In order to determine the rules that apply, you first have to determine whether the removal is part of a pattern of removals that should be treated as a change in placement. For the removal to be part of a pattern, three things must be true:

the suspension is part of a series of removals which, when added together, amount to more than 10 days.
the behavior in each removal is substantialy similar.
Other factors, such as time of removal or proximity of removals to each other, support the suggestion that it is a pattern of removals.

If it is a pattern. If all three of the above statements are determined to be true, the proposed suspension should be treated as a change of placement. This triggers the requirement to conduct a manifestation determination, provide services after the 10th (cumulative) day of suspension, and various requirements to examine and discuss how to address the behavior. In other words, the requirements are the same as if it was a removal for more than 10 days (consecutive). I'll detail these requirements in a post about long-term removals.

If not a pattern. If any one of the above statements is not true--which is more often the case--the proposed suspension can be implemented in the same way and for the same duration that it would be for a child who did not have a disability. This is the "same treatment" rule. As long as the school is not discriminating against the student because he/she has a disability (i.e. treating them more harshly than it would others), the school may discipline the student as it chooses. There is no requirement for a manifestation determination or to provide services during suspensions of not more than 10 days. The school may or may not be required to address the behavior depending on whether it represents an unmet disability-related need of the student or intereferes with the child's learning or the learning of others.

Think beyond the law. In any case, it is good to remember that schools and parents can agree to take actions that are not necessarily required by the law. Creating a plan to help ensure the student does not regress or otherwise minimize the impact that the removal has on the student's progress is always a good idea and will benefit everyone involved. Similarly, talking about how best to prevent similar behavior in the future is just good common sense.

I'll try to cover more discipline issues in future posts, including: stay put provisions, long-term removals (change in placement), manifestation determinations, behavior that impedes learning, functional assessments and behavior plans, and positive behavior supports and interventions. Stay tuned, and if you have a discipline issue (either one of those above or one I've not mentioned) that you particularly want to have addressed--let us know.

Ability Blog's Introduction to Early Intervention

2007-12-16T02:00:00.001-06:00

Randy Chapman's Ability Blog just posted a very good introduction to Part C and early intervention services entitled Taking Giant Baby Steps. I highly recommend new parents who suspect their child might have a disability or whose child is being evaluated take a look.

Baby Steps: A Teacher's Story

2007-12-16T00:40:00.001-06:00

Another real story--this one is told from the teacher's perspective.

Ichmad, who had deaf-blindness and very low muscle tone, came into my preschool classroom in the early 1980s. His mother was becoming a strong advocate for him, and it soon became clear that she wanted Ichmad to walk, despite the fact that he wasn't doing anything except scooting or rolling a little bit. The physical therapist felt that developmentally, Ichmad wasn't ready to walk. But he was very long and lanky and adding weight. His mom couldn’t carry him anymore. Also, she was firm that she did not want a wheelchair in her life at this point. She wanted him to walk.

The PT wasn’t really thrilled with the idea. She told me that she thought this was not a productive path for Ichmad to be taking at this point. Being a young teacher, I was ready to look at the PT and say, “whatever you say is right.” But I had to balance this parent in my ear saying, “I don’t care about developmental stages; I need my child to walk.” I could empathize. So I asked what we could do to make it a productive path. The PT felt working on leg strength had to be first. So, we worked on leg strength in the classroom, while the PT continued her therapy.

Initially, when Ichmad stood, his legs could collapse. He had no ability to lock his knees. However, we (the para, the PT, and I) tried to think of times when we could practice bearing weight. We decided he would have to stand at a shelf and hold himself up – first with help, then independently, whenever he chose an activity. After choosing his materials, we would take him to a table and again we would make him stand and support himself. He also practiced this skill when he was finished by putting things away. So, we practiced leg strength, by embedding it throughout the day.

And lo and behold, Ichmad started locking his legs. Then he could stand for greater lengths of time, holding himself. As he began to do that, the balance was important – getting to hold himself upright without falling. Then we tried to get him to begin taking baby steps by bumping his foot forward. Then, when he could actually cruise the furniture, we began to have him walk around the classroom, using our bodies for support. Within a year, he was using a walker and moving around the classroom.

In retrospect, the things we all did we baby steps that led to this wonderful transformation. I think Ichmad’s classmates were very important to his success. Preschoolers are very warm and accepting. To them, Ichmad was a child first. They naturally celebrated his small steps, and that motivated him. It was one of those times when “never say never” hit me in the face. It’s okay to teach skills out of sequence sometimes. If the child shows progress, follow his lead. The obvious path might not always be the most productive one.

How to Initiate Early Childhood Screening and Evaluation

2007-12-13T08:40:00.001-06:00

The following tips are for parents who have concerns regarding speech, hearing, or other developmental issues for a child between the ages of birth to 5 years:

1. Contact the local special education agency to discuss your concerns (usually a school district).

2. Some special education agencies will refer birth to 2 years 9 months children to a separate agency. The initial point of contact should still be the special education agency.

3. Options will be provided to parents regarding screening versus full evaluation. A screening is an informal observation to determine if a more formal evaluation is necessary. Parents should be provided a copy of parent rights.

4. A screening may be conducted to determine if a full evaluation is necessary. If a full evaluation is deemed appropriate, parents will be required to sign a consent form.

5. A mutual exchange of information form may be provided for parents to give consent for the special education agency to have open communication with doctors, preschools, daycare, or any other relevant agency/persons.

6. Parents or other caregivers may be asked to complete behavior rating scales or other questionnaires.

7. When the evaluation is completed, a meeting will be set up to discuss the information gathered and to determine if the child meets the criteria for placement in a special education program.

8. If the child qualifies for special education services, a meeting will be scheduled to develop an IFSP to address any services required to help meet the child’s special education needs.

How can service providers develop trust with parents of children with disabilities?

2007-12-12T16:15:00.001-06:00

Previously, we posted a tipsheet on parents partnering with schools. But it takes two to tango, so here is another tipsheet--this time for professionals.

Parental involvement in their child’s intervention is a key factor in producing positive child developmental outcomes. A key to encouraging parental involvement is a trusting relationship between parents and their child’s service providers. Listed below are some steps, for service providers to follow to build trust between parents and themselves.

Tips

1. Professionals can convince parents of their competence by constantly learning new information and sharing this new knowledge with parents.

2. Professionals need to demonstrate honesty to parents by admitting “I don’t know” about a certain topic (but then also know where to find more information about the topic and share that information source with parents).

3. Trust implies dependability. Professionals can demonstrate dependability by consistently and promptly returning calls, by avoiding promises that may not be kept, and by always following through on a query or request.

4. Parents have said that a critical aspect of trustworthiness in professionals is their belief that their child will be safe when in the care of the professional. This includes not only safety from possible physical danger, but also safety from humiliation, teasing, or other emotional harm. Professionals can demonstrate this kind of trustworthiness by explaining or showing parents the steps taken to ensure their child’s safety, by insisting that peers treat each other with dignity, and by providing procedures for ensuring the privacy and dignity of the child will be protected.

5. Another critical aspect of trust is the preservation of privacy and confidentiality concerning issues related to the family and child. Professionals can demonstrate this kind of trustworthiness by avoiding discussions about other families or children in the presence of the parent, by consistently following written procedures and asking permission before sharing information with another professional or agency, and by maintaining confidentiality strictly and consistently with all children and families in the professionals’ care.

6. By frequently updating parents, professionals can demonstrate that the child is making progress.

7. Professionals need to demonstrate to parents that they are optimistic but not unrealistic about their child’s progress. In other words, professionals need to set high standards for children but also realize that achieving those standards may not be easy.

Holiday Giving: Donatations to Help Families with Children in Early Intervention

2007-12-11T10:04:00.001-06:00

Amid the hustle and bustle of this holiday season--regardless of whether you celebrate Christmas, Hanukkah, Kwanza, or another winter holiday--it is a good time to remember those in need. One of the best gifts I have received on any holiday is a donation to a worthy cause in my name.

So, as an antidote to ubiquitous marketing and commercialism, I want to invite everyone to suggest a worthy charity organization, focused on early intervention or support for families of children with disabilities, for holiday giving.

The posts are moderated, so give me a day to screen and authorize your suggestions. If I get a significant number of responses, I'll write a new post with links or contact information to your recommendations.

Happy holidays.

Waiting lists for early intervention?

2007-12-09T22:52:00.001-06:00

I know that many states have waiting lists for community-based waiver services (Medicaid), but this story in the Reno Gazette Journal today, State's failure leaves families awaiting help, surprized me.

Apparently, Nevada is putting children on waiting lists for early intervention services because they have more applications than they can handle. IDEA is an entitlement--there should be no waiting lists. According to the article, state officials recognize that they are violating the law but cite dramatic increases in referrals as the source of the problem. But, the State Bureau of Early Intervention Services also seem to be trumpeting the "success" of being in compliance with the law 96.3% of the time in an August press release. Disability advocates in the state blame unrealistic projections of service needs in the budget combined with political pressures to cut costs.

This seems pretty outrageous to me. Mostly compliant is hardly good enough when it comes to access to early intervention services. One of the children in the article was diagnosed with Autism at 18 months and aged out of Part C before receiving any services. There isn't a big window of opportunity here.

If it is a money issue, they need to allocate more--it will save the state money in the long run (both through prevention and fewer legal costs).

I hope this is a very isolated case, but I don't really know. Anyone know of similar issues in other states?

Developing good partnerships with your child’s school personnel

2007-12-09T21:36:00.001-06:00

There are few things that foster a child potential more than a good partnership between families and service providers. Here's a short tip sheet from the Beach Center resource library about how families can form good partnerships with professionals.

Tips

1. Acknowledge and foster the provider’s commitment to your child, and to your child’s needs and best interests, as a valued partner. Be aware that each partner has unique and powerful skills, which strengthen the partnership.

2. Clarify your family’s and child’s privacy considerations and expectations in your first visit with every provider/partner.

3. Regularly discuss your child’s performance and condition in a way that invites the provider to suggest new and novel ways to help meet the child’s total needs.

4. Partnerships grow and become stronger in an atmosphere that fosters honesty, trust and respect for core values.

5. Be open and candid in discussing your child’s needs and desires; assume positive intent on the part of the partner/providers; and clarify at the outset those family culture and values that might impact how and under what circumstances services are delivered.

6. Good partnerships are flexible and respect the time and competing interests of each partner, including the school staff, parents, and child. Ask for meeting times and places (perhaps your home) that best meet you and your child’s scheduling needs.

What families and professionals in early intervention need to know

2007-12-09T01:47:00.001-06:00

This tipsheet was created based on discussions among participants in our Early Childhood Family Support Community of Practice (CoP).

Families need to know

What the disability ‘means’ for their child/family

What it means for their family’s and child’s future (e.g. Know if their child is going to be okay)
What other families do (e.g. How other families cope with similar situations)
How to connect with experienced families (e.g. How to meet and talk to families who have already been through this)

How to manage time and resources

How to balance family needs with child needs (e.g. work/economic needs, sibling needs, etc.)
How to manage finances (e.g. programs/services to help with costs, how to get time off from job)

About EI services

What is the role of EI services (e.g. what are they, and what is the goal of providing them)
What other services are available (e.g. health and support)
What are my service options (e.g. Medicaid therapy outside of school)
What do these terms mean and what do these services involve (e.g. what does family-directed mean, what is a transdisciplinary model of delivering services, how is this different, how is this different from the coaching model)
How much service is enough (e.g. Isn’t more always better, why is doctors recommendation for amount of services not followed)
How do I find, or know I have, a qualified provider (e.g. What’s the law say about the qualifications of providers)
Where is the best place for services to be delivered (e.g. why does the EI provider want to come to my home, why an inclusive setting, how do I know my child will do ok with this placement, won’t other kids make fun of him, ect.)
What are my rights and responsibilities (what does entitlement to a multi-disciplinary assessment mean, what is my role on the IFSP team, how do I complain or dispute a decision)
What do other people do (e.g. what are the roles of IFSP team members, what is the role of my service coordinator)

Professionals need to know

About the Family

Their Vision
Their Goals
Their Priorities (e.g importance of connecting to other families)
Their Needs
Their Strengths and Capacities
Their Concerns
Their Culture
Their Home
Their Child (needs, strengths, potential)
Their whole family (members, structure, routine)

About Information and Services

Services available (what, where, how to get them, etc.)
Other sources of information (e.g. internet, local sources, etc.)

How to communicate with families

Have available and use multiple methods of providing knowledge (guidebook not enough)
Provide multiple opportunities to learn (information repeated many times)
Elicit/encourage/facilitate vision from family
Connect families with other families who have experience with similar issues

Segregation or Inclusion? Educational Supports for Children with Disabilities

2007-12-07T16:35:00.001-06:00

A member of the Early Childhood Family Support CoP recently described an initiative to launch a "short-term, intensive, individualized educational program for children with physical and communicative disorders." If realized, the guiding philosophy for this program would be transition back to a local school. The program has received funding for a facility that will be located so that it can serve five school districts. The program, as it is now planned, will only serve children with disabilities. In other words, if it comes to be, it will provide a segregated education for children with disabilities.

The description of this program led to a lively discussion within the CoP. One mother wrote, "To those of us who remember life before inclusion, it is a somewhat scary concept to think of a fully segregated school. For our sons who have Fragile X syndrome, it is known that much of their learning occurs incidentally. The broad base of knowledge that they now have as young adults is a direct result of their exposure to concepts taught at school that were believed to be beyond their grasp. Their observations and interactions with typical peers were invaluable in their language and social skills development." One of the researchers in the discussion wrote that it seemed counterproductive to provide instruction to get children ready for a natural environment. This is especially true given the amount of good research-based information we have about providing instruction in natural environments.

At the same time, there is an acknowledgement that some children need at least some time in a more intensive, one-on-one environment. For example, a special education teacher wrote that she had taught in both a full inclusion school and a self-contained classroom. She saw benefits and drawbacks in each of the settings for delivery of specialized instruction. She wrote, "I certainly did not need 7 hours of segregated instruction, but I valued (and my students benefited instructionally) from 1:1 instructional time with me." This teacher went on to say that her students also benefited from time with their typical peers, learning things she could not teach them or didn't think to teach them because the occurred naturally. Another mother described the school in her community, which developed "social skills classrooms." There was one for young children and one for middle school children. "Both programs are housed in K-8 schools and the children interact in regular classrooms as they are able. In my opinion, it is not a perfect solution. however it provides families with options they did not have before, and truly works well for some."

The discussion in the Early Childhood Family Support CoP is not isolated. A recent article in the Wall Street Journal describes how many parents of children with autism are rejecting typical classrooms and asking that their children receive specialized instruction in specialized classrooms (Parents of Disabled Students Push for Separate Classes, By ROBERT TOMSHO, November 27, 2007; Page A1).

What do you think? Is there a place for segregated schools and classrooms? Is this a move back to the future? Post you comments here or join the discussion in the CoP.

Resources Recommended by Monica and Jo (Logan's Story)

2007-12-07T09:33:00.002-06:00

Joubert Syndrome

Joubert Syndrome Foundation & Related Cerebellar Disorders

Sponsored by the Joubert Foundation, this website provides information about this rare genetic disorder and links to additional resources.

Technology

Keywack

Tucows is the publisher of the game designed to stimulate young learners by engaging in interactive play through touches on a keyboard.

Hyperstudio

Hyperstudio is a multimedia thinking tool for interactive learning. This link provides product information and details about ordering the software.

Logan’s Story: It Takes a Village

2007-12-07T00:50:00.001-06:00

From a doctor’s office in Topeka, KS came a phone call from Monica, the young mother of then 18-month-old Logan to the TARC Infant and Toddler program. Logan’s pediatric neurologist had concerns about his development and wanted to support the family in the best way he knew how, by referring him to the very capable infant and toddler program in his area. Logan’s doctor suspected a possible diagnosis of Joubert Syndrome. Joubert Syndrome is a very rare genetic disorder that can affect muscle control, breathing, and tongue and eye movements. It can only be fully diagnosed by a brain scan that reveals a malformation resembling the shape of a molar.

No Diagnosis Needed

After spending months in doctors’ offices and undergoing multiple tests and probes, Monica decided to opt out of the additional testing and screening required for an official diagnosis. Instead, she and her family decided to focus on Logan’s development and growth. Monica explained, “As we kept going to the doctor and kept being sent here and sent there, I decided I really don’t care what it is. I just wanted to make sure that he is getting some help and developing as much as he can.” As Monica and her family worked diligently to support Logan and help him grow and develop, they saw he was not making the progress they’d hoped he would. Contacting the TARC Infant and Toddler program was the next step in providing Logan the additional support he needed. Jo, an occupational therapist with the Infant and Toddler program, met with Logan, Monica, and the rest of their family, and she asked them one simple question,“What would you like for Logan?” At the time, no one knew what a defining moment that would be. When Jo first met Logan and Monica, his view of the world was mostly from his back, unless he was being held. Logan was rolling a little to reach things he desired, he was playing peek-a-boo, he could pick things up and drop them again, use gestures, and say “mama.” However, Logan was not able to sit up on his own nor could he feed himself, and those were two skills Monica desperately desired for him.

What Would You Like for Logan?

Jo asked one simple question, with no simple answers. Everyone had always been very accepting of Logan and his abilities, but when asked that one question, it was as if a new view Logan’s life came over Monica and her family. As a matter of fact, Monica had a list of things she wanted to see Logan do. According to Jo, Logan was not only being loved and accepted as Logan, but he was seen as a “child developing with a lot of potential.” That one simple question led Monica to generate several goals for Logan:
1) hold his own bottle and feed himself,
2) become more mobile so he can follow Mom into another room,
3) sit independently without risk of falling,
4) be able to play with the other kids at day care and
5) give Mom a kiss on the cheek. Logan not only met those goals, but he surpassed them.

Logan’s Village

Today Logan can do so many things. “I’ve never seen a baby do some of the things he does,” Monica said. In the past four months, Logan has learned to stand while holding on to something, he can sit independently, and he can feed himself. At child care, he is sitting up 75 percent of the day, using an adapted chair with a tray in the front that assists with posture and eating. He now sits at the table with the other children and even helps to hand out the napkins at meal times.

Monica, her family, Logan’s child care provider, and Jo have all worked closely to think of ways that they can help to support Logan’s development. They are Logan’s village. For this village, it is not the diagnosis that matters, it is Logan. With new-found ways to support Logan and his development, every one in his village seems to be using their gifts to help. The family wanted to help Logan learn a new skill of opening a closing a door that was different from the kitchen cabinets. Because Logan loves doors, his grandfather, Tom, made him a wooden box with a handle that will allow him to practice that skill and to have a special place to put his toys. Jo had two special chairs made (one for home and the other for day care) to help Logan sit up, put pressure on his legs, and manipulate objects on a tray in front of him.

A Gradual Process

In addition to the various skills Logan has learned, a few more challenges still needed to be addressed. Logan had a pair of glasses that did not work for him. He was not tracking very well. Jo was able to bring in another of her collogues, a vision specialist, who then began working on cognitively focused tracking activities with Logan. When Logan first began using the tracking activities, he was looking out of only one of his eyes. Now he focuses on things head-on and is learning to view his world with both eyes. Although he has had less significant gains in his speech, he is using some sign language and has become quite expressive using non-verbal cues. Monica said, “If I were to learn a second language, it would be sign language. I’d like to see Logan use it more.”

This summer Logan has been spending time swimming at a local pool. According to his grandmother, Melissa, “he loves to swim and is learning new movements all of the time.” In addition to his physical activities, TARC lent Logan’s family a computer so he could practice some of the skills surrounding cause and effect. The computer program they are using is entitled Keywack. Not only is Logan able to practice on his very own computer, but now he is able to imitate his mom as she continues to work on her computer. One of Logan’s favorite activities is listening to music. His favorite song is “Sweet Home Alabama.” By listening to the song, he learned how to say the word “’Bama.” In an effort to build on his interest in music, Monica and Jo are trying to create a “Sweet Home Alabama” activity using the Hyperstudio program on Logan’s computer.

Logan’s Future

Logan continues to grow by leaps and bounds. Both his family and the rest of his village are amazed at how much he has developed since that initial IFSP meeting in January 2006. Everyone is excited to see what new and amazing things he will do in his future. Melissa shared a very important sentiment. “I have been a teacher for 22 years and I don’t read the files of my students coming in. I don’t see a need for that because it only tells me what other teachers thought the students were capable of doing, so it puts labels and restrictions. All I can say is challenge them the best you can and let them take off. You never know when they might bloom.” Logan certainly is blooming.

What Makes This Village Successful?

When asked to describe what makes this partnership successful, characteristics such as determination, optimism, and working towards the same goal were used. Tom, Logan’s grandfather, summed it all up by saying, “We don’t quit. If there is challenge, we figure out how to work it out.” Melissa, Logan’s grandmother added, “We really try to focus on the ‘cans.’”

Making it Real . . .

2007-12-06T00:59:00.001-06:00

After two posts in a row talking about "rights" and "requirements" as if they floated about in the ether, I'm ready to change it up a little--and you probably are too. Fact sheets about the law are useful and informative, but they can be pretty stale and impersonal.

So later today or tomorrow, I am going to post at least one 'Real Story' from the Beach Center's resource library.

If you want to help select the best one, go to http://www.beachcenter.org/resource_library/browse_resource_catalog.aspx

Click on Type and select Real Stories from the drop down menu.

Look through a few and post a comment letting me know which one(s) you think every parent, professional, and policy-maker should read.

Content of Individualized Education Plans

2007-12-05T19:57:00.001-06:00

All children with disabilities in special education must have either an individualized education program (IEP) or an individualized family service plan (IFSP). Generally speaking, IEPs are for preschool and school age children while IFSPs are for children under three (those in early intervention). Both are developed by teams that include the child's parents, but their contents differ in some significant ways. So, for parents getting ready to move from Part C to Part B of IDEA, here's a quick overview of the different legal requirements for plan content:

Statement of Current Capacity

IFSP requires:

Present level of physical, cognitive, communication, social, and adaptive development
Family needs, resources, priorities, and concerns regarding their child’s development

IEP requires:

Present level of academic and functional performance
How disability affects inclusion in appropriate activities

Statement of Goals

IFSP requires:

Measurable results expected
Criteria and procedures, used to determine progress or need for revision
Timeline to determine progress

IEP requires:

Measurable annual goals for inclusion in the general curriculum and to meet all other needs
How progress toward goals will be measured
How often progress reports will be given to parents

Statement of Services

IFSP requires:

Specific early intervention services necessary to meet the child’s needs
Specific early intervention services necessary to meet family’s needs
Start date, frequency, intensity, duration, and method of delivering all services.
Identification of service coordinator

IEP requires:

Special education services
Related services
Supplementary Aids and Services
Program modifications and supports
Start date, frequency, location, duration, and relationship of all services to goals

Inclusion Explanation

IFSP requires:

Natural environments in which services will be provided
Explanation of extent services not provided in a natural environment

IEP requires:

Explanation of extent child is not with peers
Explanation of extent child is not taught general curriculum

Transition Plan

IFSP requires:

Steps to be taken to support transition to preschool or other services
Coordinator to be named who will be responsible for transition

IEP requires:

Planning for post-secondary transition when the child becomes 16

IDEA and Parent Rights to Participate

2007-12-03T15:58:00.001-06:00

Under the Individuals with Disabilties Education Act (IDEA), parents have rights related to their child's individualized education program (IEP). Those rights exist in the context of the special education system that IDEA sets up. I've always found that understanding and remembering IDEA's basic framework of parent's participatory rights to be easier if you understand the basic process of special education. At the top of the post is a very simple diagram of how the process is supposed to work. For each of the four stages, IDEA provides parents with rights to participate--although there is obviously some overlap among them.

(1) Identify Needs: the initial stage is to evaluate and assess the child's needs (and strengths) to establish eligibility for special education and provide the basis for choosing services and settings. Parent rights related to evaluation and assessment include rights to:

Request an evaluation (or re-evaluation)
Consent or withhold consent to evaluation (but withholding can be challenged)
Receive procedural safeguards notice (a notice of rights)
Be on the evaluation team and participate in all team discussions & decisions
In early intervention, direct an assement of the family's strengths and needs
Obtain an independent evaluation if they disagree with the findings

(2) Respond to Needs: after identifying needs, you need to address them. This includes creating an individualized education plan and putting it into practice. Parent rights related to responding to needs include rights to:

Be on the team that creates the IEP and participate in all team discussions & decisions
Mutually agreed upon meeting times and notice of meetings
Interpreters and materials provided in their native language (as necessary)
Consent or withhold consent to services (some or all in early intervention; all or nothing otherwise)
In early intervention, family services to support the family's ability to meet the needs of their child with a disability

(3) Measure Progress: part of implementing the IEP is assessing the results. This includes negative as well as positive results. It also includes IEP planned measurements and situational developments reflecting progress, problems or emerging needs. Parent rights related to progress include rights to:

Access and review their child's educational records
Participate in any determination of behavior as a manifestation of their child's disability.
An IEP team meeting to review the child's progress at least annually, or for early intervention, every 6 months.

(4) Report Progress: when schools measure the progress of students, parents have a right to expect the school to take affirmative action to tell them how their child is doing. So, in addition to the above rights, parents have a right to:

Receive prior written notice of any proposed change or refusal to change the child's identification, evaluation, or placement.
Receive notice of any disciplinary action proposed by the school in response to their child's behavior
Periodic reports of their child's progress (at least as often as reports for other children)

After reporting progress, the cycle begins again by building on what worked and what didn't work and by asking what has changed and what re-evaluations or new evaluations are necessary (if any).

Parents' participation in their child's education is a fundamental principle of IDEA and these rights support that principle. The above outline, is of course, just an overview. In future posts, we'll try to specifically discuss some of these rights in detail. We'll also discuss additional parent rights related to challenging the decisions of schools and rights that parents hold and may enforce on behalf of their child.

Research Highlights for Families

2007-12-02T20:55:00.001-06:00

One of the goals of this blog is to summarize and disseminate useful information from early childhood research to families. It seems to me that there are two ways in which we could approach this task.

First, we could summarize the findings of individual research studies. The Beach Center has been doing this sort of summarizing of its own research for some time in the form of PDF "research highlights." For example, we created a research highlight of a published article on Participatory Action Research by Turnbull, A.P., Friesen, B.J., & Ramirez, C. (1998).

Of course, we have only consistantly used the research highlight approach with our own work and doing so with the work of others as well might be very time consuming. This is what makes the second approach so important.

Second, we could synthesize the literature reporting studies in a topic area and summarize what the research says and does not say about the topic. While the Beach Center has never previously focused on a synthesis approach (instead conducting its own independent studies), we have conducted some syntheses and created research highlights when we publish those studies. For example, we created a research highlight for a study on the Impact of Deafness on Quality of Life by Jackson, C. W., & Turnbull, A. (2004).

Synthesis of research not only provides a very important service to the research community by consolidating research into a form that clarifies what future studies are needed, it also makes it easier to give families the bottom line of what we know and don't know.

This blog will be central to our future dissemination efforts and will take both approaches (at least for now). We will begin by posting links in the blog to some of the research highlights related to early childhood that already exist in the Beach Center resource library, such as the ones above. Afterall, we don't want to leave our past successes behind in our pursuit of the future. We will also begin discussions in our CoP about the form of these summaries and how they should interrelate with our other goal for knowledge translation and this blog--the insight and widom of families and professionals. But that's another blog post.

Blogging on Early Childhood Research

2007-12-02T19:27:00.001-06:00

One of the most frustrating things about conducting research is the difficulty of making your findings available to those who could use them. To the extent the results of your studies are relevant to those who also are conducting research, there is a clear mechanism for disseminating what you have learned--peer reviewed journal publication. But ultimately, the point of research is to benefit the population studied. Here, the mechanism is far less clear.

At the Beach Center on Disability, we always try to ask the "so what?" question. In other words, we always ask ourselves what difference our activities make in the real world. How does it help people with disabilities or their families? What difference does our work make? One way to answer this question is to involve people with disabilities and their families in the planning and conduct of our research--as partners as well as participants. A second approach is to make sure what we learn from research is provided in a format that is accessible, understandable, and useful to families as well as professionals.

I think that the Beach Center has, to a great extent, been a leader in the field when it comes to both participatory action research (involving families in our work) and translating research knowledge into usable tips, trainings, and resources for families. But we also believe that increasing use of the internet and emerging internet technologies have the potential to increase our ability to partner with families, distill practical knowledge from research, and share that knowledge. We intend to make the most of these opportunities.

This blog is a part of that effort. Blogs are fast, flexible, and easy to use--an ideal medium for providing up to date, free information for families. We can post family friendly research summaries, talk about developments in disability law and policy, post tips and real stories, or highlight other resources by using links to our website and those of others. Additionally, you--our readers (as well as participants in our CoP)--can let us know whether what we post really captures the spirit of the "so what" question. You can suggest other things to post about or just share your comments. Please feel free to do so.

Welcome to the Early Childhood Family Support Blog!

2007-11-27T12:54:00.001-06:00

To understand what this blog is about, it will help to understand its origins.

The Beach Center hosts an online community of practice (CoP) on supporting families with children in early intervention. A community of practice, basically, is just a group of people sharing their ideas and trying to come up with new ones with respect to a common area of interest and experience. You can view or join our early childhood community by going here [Early Childhood Family Support CoP] and completing the registration.

One of the driving questions in our community of practice is "what information and resources do families and professionals need about how best to achieve good early childhood outcomes?" For us at the Beach Center, this is a very practical question because it helps us know what information to gather, research, and disseminate to help make a difference in the lives of individuals with disabilities and their families. Our CoP--which includes parents, professionals, and researchers in early intervention--helps us focus this question on particular areas of need (e.g. parents knowing their rights, how to partner with early childhood staff, how to find services, etc.). But the CoP isn't about its members asking questions and the Beach Center answering . . . far from it. Families and early childhood professionals have valuable experience, insight, and wisdom. A CoP is about collaborative learning, and everyone on the CoP is an equal member--we are all teachers and we are all students.

Some of our discussions on the Early Childhood CoP have been very productive. We have created tip sheets based on those discussion. But we lacked a medium for quickly and easily sharing these tips with people who are not part of our CoP. This is where this blog comes in. It is the portal from which the ideas in the CoP can be more broadly disseminated. This also gives people who are not part of our CoP the chance to comment on each of the resources we provide. This idea--to disseminate what we cooperatively learn and develop in our CoP--was the original motivation for creating this blog.

But then we started getting other ideas. We could post real stories from families. We could post news updates relevant to early childhood and family support. We could post summaries of research studies. We could inform others about early intervention resources available on the web or elsewhere.

We could do all these things--and I think we will--but we also need to focus. So what is this blog about? Early childhood and family support issues. What will you be able to find here? Well, to a certain extent, that depends on you. Help us decide which of our ideas to most focus on. I've put up a survey in the right column with some of our ideas. Let us know what you think we should focus most on.

So, welcome! and thank you for coming to our Blog.

Looking for something?

2007-11-27T11:25:00.001-06:00

We now have two posts on this blog--including this one. This makes it very easy to look through what we have posted, just scroll up and then scroll down. But this elegant simplicity will not last, so I thought I would give a few tips about finding what you are looking for on this blog.

Tip #1 - the most current post is generally at the top of the page (I cheated to have this one come second). Posts are dated.

Tip #2 - the sidebar on the right includes links to our CoP (join the discussions!!), the Beach Center's website, and Google docs. Google docs is where CoP members can collaboratively write fact sheets, resource lists, articles, and other documents. If you are part of the CoP and don't have the login/password--email Matt or George and we'll send it to you.

Tip #3 - the sidebar also includes two navigational tools. The first are topic folders. We 'tag' each post with keywords and the posts are then 'filed' in the topic folders based on those keywords. The second tool is a folder archive that saves the posts by the date they first appeared. So you can browse by subject or by date.

Tip #4 - If you want to comment on a post, click on the comment link at the bottom of the post or reply to one of the comments already posted. They are moderated (viewed and approved), expect some delay before they show up.

Beach Center Blog Policy Statement

2007-11-01T21:29:00.001-05:00

Beach Center Blog Policy

General Statement of Copyright

The Beach Center is committed to providing an environment that supports research and teaching activities. As a matter of principle and practice, the Beach Center encourages all members of the academic community to publish without restriction their papers, books, and other forms of communication in order to share openly and fully their findings and knowledge with colleagues and the public. The Copyright Policy has been prepared in this spirit and with this intent. The Copyright Policy is intended to promote and encourage excellence and innovation in scholarly research and teaching by identifying and protecting the rights of the Beach Center, contributing faculty, staff, and students.

The Beach Center website, including but not limited to web pages, images, photographs, publications, and resources, unless otherwise noted, are the property of and copyrighted by the Beach Center on Disability. All rights reserved, unless specifically noted otherwise on the materials (webpage, document, image, etc.).

In some instances, specific contents may be copyrighted or trademarked by others. We use standard copyright notices and legally accepted creative commons copyright notices on materials not owned by the Beach Center to denote the ownership and restrictions placed on the use of these materials.. By using any of this material, you assume all risks of copyright and/or trademark infringement and related liability.

Notice of Ownership and Copyright

Although the Beach Center generally includes a basic statement of copyright on each page of our website and on each document or other material available on our website, the absence of such copyright notice in any material on the Beach Center website does not, and should not be taken to, abrogate any ownership or intellectual property right of the Beach Center or other copyright holder in the content. The presence or absence of a statement of copyright on any material on the Beach Center website does not limit, in any way, the Beach Center or other copyright holder’s intellectual property rights in the content of that web page or material. The function of the copyright statement is to provide notice of copyright. In the absence of specific copyright notice, materials are and should be assumed to be copyrighted with all rights reserved. Applicable law and the Beach Center Policies and Terms for Use govern the nature and scope of the Beach Center’s intellectual property rights for all web pages and website content.

Digital Millennium Copyright Act

The Digital Millennium Copyright Act, signed into law on October 28, 1998, amended the copyright law to provide limitations for service provider liability relating to material online. Subsection 512(c) of the copyright law provides limitations on service provider liability with respect to information residing, at direction of a user, on a system or network that the service provider controls or operates, if the service provider has designated an agent for notification of claimed infringement by providing contact information to the Copyright Office and through the service provider’s publicly accessible website. 17 U.S.C. 512(c).

Notification of Claimed Infringement Under The Digital Millennium Copyright Act:

If any owners of copyrights believe the Beach Center’s users are infringing copyright protected work, they may send a notice to the Beach Center’s designated agent at:

DMCA Designated Agent for the Beach Center on Disability Blog:

matstowe@ku.edu

Information regarding the Digital Millenium Copyright Act can be found online at: http://www.ku.edu/~vcinfo/Copyright/DMCA.html

Accessibility

The Beach Center on Disability is committed to providing an accessible website for individuals with disabilities and their families. Our goals for accessibility are:

1) To meet the most current Web Content Accessibility Guidelines established by the World Wide Web Consortium (W3C) as well as those set forth by Section 508 of the Rehabilitation Act. For more information see: http://www.w3.org/TR/WAI-WEBCONTENT.

2) To meet the individual accessibility needs of those for whom these standards are not sufficient to guarantee access.

The Beach Center staff recognizes that accessibility is an ongoing responsibility and tries to perform regular checks on the accessibility of our website and the extent to which it meets the above recommendations and standards. While we cannot guarantee that we will meet these standards at all times due to the dynamic nature of our site and the need to regularly update content or that these standards and conformance measures will ensure accessibility for all people with disabilities, we will try to address any barriers to access over and above those addressed in these guidelines when brought to our attention.

In addition, for specialized Web-based applications, such as PowerPoint displays or audio and video components, the Beach Center staff will work closely with individual viewers with accessibility challenges in order to identify and/or rectify accessibility barriers that may be inherent in certain designs or software applications.

Please contact our Web Administrator for help in resolving any accessibility problems you experience with our site.

Privacy and Confidentiality

Unless a visitor explicitly waives the confidentiality and privacy requirement, the Beach Center and its staff will keep all personally identifiable information provided by visitors completely confidential whenever such information is delivered in a manner that provides a reasonable expectation of privacy. Information about an individual that is publicly posted on the web site by that individual will not be considered to create a reasonable expectation of privacy and will be considered to be the equivalent of an explicit waiver of confidentiality with regard to all information provided in that post. Unless consent has been given to disclose such material, all e-mails, instant messaging, and other person-to-person communications will be regarded as confidential to the extent they contain personally identifiable information. For the purposes of this document, confidentiality is defined as not making personally identifiable information available to any other organization, public or private, or its employees.

The Beach Center and its staff will respect the wishes of anonymous visitors to our website and respect their right to privacy. We do not attempt to ascertain the identity of visitors who do not willingly disclose such information.

Information automatically collected about visitors to the Beach Center website (i.e. web analytics) is for use in the aggregate (we do not use individual data) and will be used exclusively for the purpose of evaluating, reporting, and improving the performance and outcomes of the Beach Center’s website and web activities over time. You will not receive advertisements, solicitations, emails, or any other message simply by virtue of your visit to our site.

External links disclaimer and policy

The Beach Center website contains links to many external websites and materials that are not part of the Beach Center website (third party web pages). Links to these third party web pages are provided solely as a convenience and should not be taken to indicate ownership, control, endorsement, monitoring of, approval of, or responsibility for, the third party site or its contents by the Beach Center. The Beach Center has no control over the accessibility for people with disabilities of third party web pages.

While most sites welcome links that draw new individuals to their web pages, legal actions have been pursued when links have been used to bypass the home page and thus the efforts of the owner to display or use cookies, security measures, tracking techniques, stated terms of use, and disclaimers. Other complaints include the use of framed links to mislead the viewer into believing that the site is of your own creation or links to libelous or defamatory information. Because of these emerging concerns, the Beach Center website will employ external links in a responsible manner using the following guidelines:

(1) The Beach Center website will not use frames to open links to outside pages within our own pages.

(2) The Beach Center website will not link to a picture or embed a graphic without permission of the owner.

(3) The Beach Center will not knowingly include links that violate an owner’s website linking policy or that lead to defamatory or libelous information.

We request that others follow these same procedures when providing a link to any web page or content on the Beach Center website, but the Beach Center provides explicit permission to link to any web page on our website (we do not have a policy against deep linking).

3^rd Party Contributions

Some parts of the Beach Center website, the Communities of Practice in particular, allow direct contribution to the website in the form of posting of comments and other materials by website users (Contributors). By contributing to our website, either directly or with the assistance of Beach Center staff, whether through comments (e.g. such as in a discussion board), cooperative writing (e.g. such as in a wiki or google docs), or other posting of materials in any format (e.g. audio, video, or text), the contributor acknowledges and agrees to the following terms and conditions as governing the contribution:

1. License to Use Materials. By contributing to the Beach Center website, the contributor grants the Beach Center a royalty-free, non-exclusive, perpetual, irrevocable, non-transferable, license to use, re‑use, display, transmit, distribute, publish, re‑publish, copy, and create derivative works based on the aforementioned comments and materials, in any format, whether digitally or in print, for any purpose.

2. The Contribution is an Irrevocable Gift. By contributing to the Beach Center website, the contributor acknowledges that they are providing the contribution of their own free will without any expectation for compensation for their contribution and that the Beach Center has the right to use contributions for any purpose (including research and public dissemination). The Beach Center cannot and will not pay for or otherwise compensate a contributor for submissions or postings or for giving us permission to post information on the Website.

3. The Contributor Guarantees Ownership. By contributing to the Beach Center website, the contributor warrants and guarantees that they own the materials they are submitting and that the contribution does not violate the intellectual property rights of any other party. Contributors must originate or otherwise own the contribution. In other words, the contributor wrote or created it, did not copy it from someone else, or received ownership from the author or owner of the contribution. The contributor agrees to indemnify the Beach Center and hold them harmless for all costs in any action for violation of intellectual property rights related to the contributor’s contribution. We reserve the right to remove any materials that may not comply with our policy.

4. The Contributor guarantees that the contribution is truthful and accurate, and not false or defamatory. By contributing to the Beach Center the contributor guarantees that the contribution is truthful and accurate to the best of the contributor’s knowledge and does not include false or defamatory statements. The contributor agrees to indemnify the Beach Center and hold them harmless for all costs in any action for defamation related to the contributor’s contribution. The Beach Center does not and will not publish material that includes statements or information that is known to be false or defamatory.

The Beach Center does not monitor or otherwise control all 3^RD party contributions and is not responsible for the content of 3^rd party contributions to its website or any harm that may arise from such contributions or reliance on their content. The Beach Center may, at its discretion, remove any contribution it deems offensive or that violates the legal rights of another upon adequate notice or when, in the judgment of Beach Center staff, there is a good reason for doing so.

General Disclaimer of Warranties and Liability
The Beach Center on Disability website is provided as a public service. Although the staff at the Beach Center on Disability works hard to provide quality information and content on the website, the Beach Center cannot guarantee the accuracy, completeness, timeliness, or suitability of the materials or information in any particular materials or document, on any particular web page, or for any particular purpose or for any particular person. This website, like many websites, is a work in progress with information being continually added and updated. Some of the content is from 3^rd person contributions. The Beach Center is not responsible for 3^rd party content and explicitly If you believe any information provided on the website is inaccurate or unclear, please inform us of your concern and we will try to respond to your concern or inquiry in a timely fashion.

THE MATERIALS, DOCUMENTS, AND RELATED GRAPHICS PUBLISHED AS PART OF THE BEACH CENTER’S SERVICES COULD INCLUDE TECHNICAL INACCURACIES OR TYPOGRAPHICAL ERRORS. CHANGES ARE PERIODICALLY ADDED TO THE INFORMATION HEREIN AS WELL AS 3^RD PARTY CONTRIBUTIONS. THE BEACH CENTER MAY MAKE IMPROVEMENTS AND/OR CHANGES IN THE DOCUMENTS AND/OR RELATED GRAPHICS DESCRIBED HEREIN AT ANY TIME.

THE BEACH CENTER MAKES NO REPRESENTATIONS ABOUT THE SUITABILITY OF THE INFORMATION CONTAINED IN THE MATERIALS, DOCUMENTS AND RELATED GRAPHICS PUBLISHED AS PART OF OUR SERVICES FOR ANY PURPOSE, WHETHER PROVIDED BY THE BEACH CENTER OR PROVIDED THROUGH 3^RD PARTY CONTRIBUTIONS TO OUR WEBSITE. ALL SUCH MATERIALS, DOCUMENTS AND RELATED GRAPHICS ARE PROVIDED "AS IS" WITHOUT WARRANTY OF ANY KIND. THE BEACH CENTER HEREBY DISCLAIMS ALL WARRANTIES AND CONDITIONS WITH REGARD TO THIS INFORMATION, INCLUDING ALL WARRANTIES AND CONDITIONS OF MERCHANTABILITY, WHETHER EXPRESS, IMPLIED OR STATUTORY, FITNESS FOR A PARTICULAR PURPOSE, TITLE AND NON-INFRINGEMENT.

IN NO EVENT SHALL THE BEACH CENTER BE LIABLE FOR ANY SPECIAL, INDIRECT OR CONSEQUENTIAL DAMAGES OR ANY DAMAGES WHATSOEVER ARISING OUT OF OR IN CONNECTION WITH THE USE OR PERFORMANCE OF INFORMATION AVAILABLE FROM OUR SERVICES WHETHER IN AN ACTION OF CONTRACT, NEGLIGENCE OR OTHER TORTIOUS ACTION.

Equal Opportunity and Non-Discrimination

The Beach Center on Disability is part of the University of Kansas research community. The Beach Center and the University of Kansas are Equal Opportunity Employers and are committed to affording equal employment opportunities for all individuals in all employment matters. Neither the Beach Center nor the University of Kansas discriminates on the basis of age, sex, race, color, creed, religion, national origin, sexual orientation, marital or parental status, or disability. The Beach Center is also committed to eliminating discrimination on the bases of any of these characteristics in all its activities. Any evidence of discriminatory practices by Beach Center employees in performance of their duties shall be evaluated and acted upon promptly through the Equal Opportunity/ Affirmative Action grievance procedures of the Beach Center and the University. Acts of retaliation for participation in grievance procedures are prohibited.

Attribution and Disclaimer Statement

This website was developed under a grant from the National Institute on Disability and Rehabilitation Research (NIDRR) in the U.S. Department of Education's Office of Special Education and Rehabilitative Services (OSERS). However, the content of the Beach Center’s website is determined exclusively by Beach Center staff and does not necessarily represent, and should not be assumed to reflect, the opinions or policy of NIDRR, OSERS, the U.S. Department of Education, or any other federal agency.

Blog Policy and Terms of Use

2007-11-01T10:37:00.000-05:00

General Statement of Copyright

The Beach Center is committed to providing an environment that supports research and teaching activities. As a matter of principle and practice, the Beach Center encourages all members of the academic community to publish without restriction their papers, books, and other forms of communication in order to share openly and fully their findings and knowledge with colleagues and the public. The Copyright Policy has been prepared in this spirit and with this intent. The Copyright Policy is intended to promote and encourage excellence and innovation in scholarly research and teaching by identifying and protecting the rights of the Beach Center, contributing faculty, staff, and students. The entirety of the Beach Center Blog is covered by Creative Copyright’s Attribution standard.

You are free:

to Share — to copy, distribute, display, and perform the work
to Remix — to make derivative works

Under the following conditions:

Attribution. You must attribute the work in the manner specified by the Beach Center--by giving credit and linking to our site but not suggesting that we endorse you or your use of the work.

Digital Millennium Copyright Act

The Digital Millennium Copyright Act, signed into law on October 28, 1998, amended the copyright law to provide limitations for service provider liability relating to material online. New subsection 512(c) of the copyright law provides limitations on service provider liability with respect to information residing, at direction of a user, on a system or network that the service provider controls or operates, if the service provider has designated an agent for notification of claimed infringement by providing contact information to the Copyright Office and through the service provider’s publicly accessible website. 17 U.S.C. 512(c).

Notification of Claimed Infringement Under The Digital Millennium Copyright Act:

If any owners of copyrights believe the Beach Center’s users are infringing copyright protected work, they may send a notice to the Beach Center’s designated agent at:

DMCA Designated Agent for the Beach Center Blog:

Matt Stowe. Email at matstowe@ku.edu

Information regarding the Digital Millenium Copyright Act can be found online at: http://www.ku.edu/~vcinfo/Copyright/DMCA.html

External links disclaimer and policy

The Beach Center Blog contains links to many external websites and materials that are not part of the Beach Center website (third party web pages). Links to these third party web pages are provided solely as a convenience and should not be taken to indicate ownership, control, endorsement, monitoring of, approval of, or responsibility for, the third party site or its contents by the Beach Center.

General Disclaimer of Warranties and Liability The Beach Center Blog is provided as a public service. Although the staff at the Beach Center on Disability works hard to provide quality information and content on the website, the Beach Center makes no warranties, either expressed or implied, concerning the accuracy, completeness, timeliness, or suitability of the information for any particular purpose. Information is provided for educational purposes, and does not create any special relationship or duties between anyone viewing the website and the Beach Center or any member of its staff—for example, no attorney client relationship can be formed through this website. This blog is a work in progress with information being continually added and updated. While we cannot warranty the accuracy of any information on the blog, if you believe any information provided is inaccurate or unclear, please inform us of your concern by sending comments to matstowe@ku.edu.

IN NO EVENT SHALL THE BEACH CENTER BE LIABLE FOR ANY SPECIAL, INDIRECT OR CONSEQUENTIAL DAMAGES OR ANY DAMAGES WHATSOEVER RESULTING FROM LOSS OF USE, DATA OR PROFITS, WHETHER IN AN ACTION OF CONTRACT, NEGLIGENCE OR OTHER TORTIOUS ACTION, ARISING OUT OF OR IN CONNECTION WITH THE USE OR PERFORMANCE OF INFORMATION AVAILABLE FROM THE SERVICES.

Equal Opportunity and Non-Discrimination

The Beach Center on Disability is part of the University of Kansas research community. The Beach Center and the University of Kansas are Equal Opportunity Employers and are committed to affording equal employment opportunities for all individuals in all employment matters. Neither the Beach Center nor the University of Kansas discriminates on the basis of age, sex, race, color, creed, religion, national origin, sexual orientation, marital or parental status, or disability. The Beach Center is also committed to eliminating discrimination on the bases of any of these characteristics in all its activities. Any evidence of discriminatory practices by Beach Center employees in performance of their duties shall be evaluated and acted upon promptly through the Equal Opportunity/ Affirmative Action grievance procedures of the Beach Center and the University. Acts of retaliation for participation in grievance procedures are prohibited.

The Big List of Family/Special Needs Blogs

2007-07-08T11:50:00.001-05:00

This is our Big List of family/disability blogs. I encourage other bloggers to look through them and share some 'link love' with a few that you most like--that is how communities are built on the web. Also, let me know of others you think should be added to the list. Blogs with descriptions (submitted by the blogger) are listed first.

Archie's Room. A story about one mom, one dad and their three children: Fraternal twins and and their beloved older brother Archie, who has Down syndrome and triumphed over a severe congenital heart defect and acute myeloid leukemia, all before he turned two-years old.

Reimer Reason. "Sharing our son with the world. He's too much for one family to contain." I have a 17 year old son with Down syndrome and anxiety issues.
The Bernard Bunch. The 'secret' diary of Abigail Bernard, aged 2, who lives in France with her French Papa, British Mama and two naughty older brothers. Abigail has a rare genetic disorder called Jacobsens Syndrome (heart, blood and developmental difficulties) and a form of epilepsy called West Syndrome.

If one of the above blogs is yours, I will be happy to add a description with the link if you'll write one up for me (a couple sentences). Also, if you want me to remove your blog from the list, I will do so upon request. In either case, just email me.

Early Intervention Program IDEA—Part C	Preschool Special Education Program IDEA—Part B
Agency
Lead Agency designated by State	State Dept. of Education
Ages of Children Served
Children, ages birth to three years of age	Children, ages three through twenty-one years
Eligibility Criteria—State MUST serve
Early intervention services must be provided to: · Children experiencing developmental delay, or · Children with a condition that is highly likely to result in developmental delay . . . AND by reason thereof, need early intervention.	Special education must be provided to children who fit 1 or more of the following categories of disability: Mental retardation, A hearing impairment (including deafness), A speech or language impairment, A visual impairment (including blindness), A serious emotional disturbance (referred to in this part as emotional disturbance), An orthopedic impairment, Autism, Traumatic brain injury, An other health impairment, A specific learning disability, Deaf-blindness, or Multiple disabilities . . . AND by reason thereof, need special education.
Eligibility Criteria—State MAY choose to serve
Early Intervention services may (at the option of the state) be extended to: · Children who are at-risk of developmental delay.	Special education may (at the option of the state) be extended to: · Children age 3-9 (or some part of that age group) who experience developmental delay
Individualized Plans
Individualized Family Service Plan (IFSP)	Individualized Education Program (IEP)
Available Services
Early intervention services for child and family to meet the developmental needs of the child and increase the family’s ability to meet the needs of their child (examples listed in regulations).	Special education and related services determined appropriate to meet the educational needs of the child (examples of services listed in statute), and allow the child—to the maximum extent possible—to participate in the general education curriculum.
Family Involvement
· Participation on all teams making decisions about the child’s individualized plan for services · Receive services to improve the family’s ability to meet the needs of their child with a disability	· Participation on all teams making decisions about the child’s individualized plan for services
Location for Services
Natural Environment—to the maximum extent appropriate, the child is served in environments that are normal or natural for a child of that age (including the home and integrated child care settings).	Least Restrictive Environment—to the maximum extent appropriate, the child receives services and participates in the general curriculum, non-academic, and extra-curricular activities alongside peers without disabilities.
Costs for Services
States may charge for services (e.g. sliding scale), but must ensure no one does not receive services because of inability to pay.	All services must be provided for free.