Service Delivery: Family Support

A diagnosis of autism begins the most profound series of changes that a family will probably ever experience. It is a journey of sadness, frustration, joy, and love, through which parents will likely experience tremendous personal growth. Receiving a diagnosis of autism can throw family members into a situation that may make their lives different from those of other families. The birth of an exceptional child into a family requires considerable adjustment on the part of family members. Families receiving a diagnosis of autism for a child will probably feel many things at once. They may feel a sense of relief that what they have been concerned about has a name; they may be frightened for their child’s and family’s future; they may be feeling guilt, wondering if they caused their child’s autism. Existing research into how parents cope with a diagnosis of autism reveals that they each go through a process of grieving. However, instead of grieving for a child who has died, they experience the loss of an “idealized” or "hoped for" child. (Seigel, 1997).

It is clear that caring for a child with autism is difficult for families and that there is a need, not only for mandated early intervention and education services for their children, but for other supports and services to assist families in their homes and in the community. Families should be referred to their local Family Support Network and Partners for Success Centers, as well as to local parent-to-parent programs and support groups such as those run by the Autism Society of America.

Families of children with autism may require additional family support services such as respite and child care, in-home behavioral training, adaptive equipment and assistive technology, social and recreation activities, and other services and supports unique to each family’s needs. Families should be referred to the Developmental Disabilities Administration (DDA) Regional Office in their area or a local service provider regarding Family Support Services that are often critical services in avoiding family crises that become much more costly, both emotionally and financially. Parents should know
that family support services are not an entitlement, which means they may not be available to all eligible families because of limited funding. Limited funding also means that although Family Support Services typically can’t meet all of a family’s needs, they can help in very significant and important ways. Family support Services are provided by local service providers with funding from the DDA. To apply for services, families should contact a local Family Support Service provider directly. For a list of agencies providing Family Support Services, call a regional DDA office.

Children with autism and their families receiving medical assistance (Medicaid) may also be eligible for additional services, including in-home behavioral supports. Families should contact their Managed Care Organization’s (MCO) special needs coordinator for assistance in accessing services. Children that qualify for the State’s Autism Medicaid Waiver may receive additional services such as respite care, environmental modifications, and intensive individual support services. Families interested in
applying for the Autism Medicaid Waiver are encouraged to call the Registry at 1(866) 417-3480.

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