Additional Support Services For People With Intellectual Disabilities And Their Families: Community Supports

Raising a child with an intellectual disability (ID, formerly mental retardation) can be a rewarding, but daunting and exhausting task. There are many appointments to keep. The process of finding and funding the needed support services can easily overwhelm families. Family members must cope with the stress of witnessing their loved one’s daily struggles with self-care, social interactions, and education. Furthermore, family members live with the knowledge that there will be no end in sight for these struggles. Finally, family members must also face their own troubling emotional reactions. Grief, resentment, disappointment, and frustration are commonly experienced. Guilt over having these normal, common emotions increase the emotional toll. Given these unique circumstances, it should come as no surprise that families often benefit from their own supportive services.

Community supports

Every community has a variety of programs and services that benefit people with intellectual disabilities (ID, formerly mental retardation). There are also helpful services for caregivers. The particular array of services in any given community will vary widely. Coordination specialists (case managers) ensure the available community services are offered to eligible recipients who need them.

Support Coordination Services: Coordination specialists (or service coordinators) are also called case managers. This term fell out of favor because it implied services recipients are “cases” (not people) who need management (versus support). Service coordinators are assigned to people enrolled in each state’s ID programs. Support coordination services are offered by state, county, or private agencies. These support coordination agencies are responsible for creating, maintaining, and executing an individual support plan (ISP). The primary goal of support coordination is to provide the right mix of supports to enable people with ID to function at an optimal level. Equally important is facilitating communication between and among service providers, family, and recipient. When one considers the range of services, it becomes clear that the coordination of these services is crucial. It might be useful to picture each of these services as spokes on a wheel, with the coordination specialist at the center of the wheel. These supportive services may include:

• social skill training
• supported housing
• supported employment
• medical and dental care
• occupational therapy
• physical therapy
• speech therapy
• financial resources
• family supports
• legal and advocacy services
• social events and activities
• leisure and recreational activities
• adult daycare services
• public transportation