Research Preview: Transition to kindergarten and family quality of life

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.