Looking for friends: unmet needs of children with disabilities.
But families who have children with chronic illness or disability find providing their children with opportunities for recreation is on the bottom of their wish list--if it even makes it to their wish list.
Understanding what activities, behaviors, and relationships characterize resilient kids and families is the overall goal of Project Resilience, a longitudinal study of factors predicting competence in children with chronic illness and disability being conducted in the Division of General Pediatrics and Adolescent Health at the University of Minnesota.
First Things, First
While family-centered care has been the buzz word for children and youth with disabilities for the past decade, little is known about family satisfaction with services. Satisfaction surveys conducted in 1980 (Leyser, 1988; Polifka, 1981) suggest that parents they surveyed were satisfied with special education services even if services were provided in segregated classrooms.
Since then, many families have discovered that normalizing life experiences foster the development of psychological and social competence. Many recognize the need for enhanced recreational experiences, the need to find a place in communities. Nonetheless, when asked, parents think of "services" as they relate to a child's medical, educational or financial needs.
While parents often express satisfaction with services their children are currently receiving, little has been done to understand how needs are not being met for families. That's why Sarah A.M. Axtell and Associates decided to look at a small portion of the interviews and surveys conducted as part of Project Resilience.
"Not only were we interested in the parents' perceptions of the adequacy of services," Axtell says, "we wanted to understand just what parents perceived were unmet needs for their children."
Overall, in this study of 187 families with children aged 6 to 24 months when first interviewed, parents were satisfied with services provided. They were asked to rank primary medical care, specialized medical care, physical therapy, occupational therapy, special education/early intervention, nutrition, respiratory therapy, specialized nursing care, case management, speech therapy, home health care, respite care, counseling, and specialized dental care.
On a scale of 1 (not at all adequate) to 5 (extremely adequate), mean ratings ranged from 3.6 to 4.5. Specialized medical care received the highest rating of 4.5 and respite care received the lowest rating of 3.6. However, less than 10 percent families interviewed were receiving any form of respite care.
Typically, when families received a service, they reported at least moderate satisfaction with the adequacy of the service.
Interviewers asked open-ended questions to get at the unmet needs of families. Interviewers helped families by giving them a "response" card listing possible services. Twenty-eight percent of families interviewed could identify services their children needed but were not receiving. This may seem like a relatively small percentage; however, these are unmet needs of infants and toddlers. Parents may have not yet learned the range of services that are available. For these young parents, it may be tough to ask for a service if you don't know it exists--or could exist.
At this stage of their children's lives, medical needs take up more of the parents' time than the children's social needs. Still, three families expressed a peed for play and section services--services not listed on the response card. The developmental needs of children with chronic illnesses and disabilities are fundamentally the same as those of all other children. Issues of recreation increase as children approach school age. Over time, parents are likely to become more knowledgeable about service systems and will be more able to identify what their children need.
Even at this early age, parents most frequently reported their child was not receiving necessary occupational therapy (therapy that focuses on fine motor control), physical therapy, speech therapy, respite care/child care, and special education.
Money seems to be the greatest barrier to service delivery. Typically, child care is not covered by family insurance policies even when specialized care is needed. Likewise, physical, occupational, and speech therapy are funded through schools rather than medical insurance. Often these children do not receive services until they are enrolled in center-based programs. For 15 percent of the families interviewed, necessary services or personnel were not available.
In addition to the barriers identified by the families in this study, others say that inadequate coordination of services contributes to unmet needs. That begs the question: Who is responsible for seeing that the needs of the child and the family are met?
The children involved in this study represent a wide range of physical disabilities, chronic conditions, and illnesses. That's because there is a fundamental belief that, regardless of condition, children with disabilities and their families have many of the same fundamental needs. However, those children with multiple disabilities dearly had more unmet needs. Coordination of services and monitoring of service needs may be particularly important for families of children with multiple impairments.
RELATED ARTICLE: Parents Report Reasons for Unmet Needs
Service Frequency Lack of funding 12 Service unavailable 18 Family choice 7 Service difficult 5 to access Child not eligible 4 for service Provider decision 4 Inadequate service 3 Communication 3 difficulties Lack of information 3 Limited resources 2
When interviewed, parents from 52 families provided these reasons for why their needs were unmet.
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|Title Annotation:||includes related information|
|Publication:||The Exceptional Parent|
|Date:||May 1, 1996|
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