The intellectual and developmental disability service system is evolving from one focused on providing service in large institutions – often far from a person’s home and community -- to one based on a flexible and dynamic system of supports and services close to home and community. The new system is tailored to the needs of persons living in their home community which include community residential and day support services.
Community residential options include group homes, single apartments with a roommate, or a family living setting. People are provided supports in their family home or their own home. Day services, such as supported employment, training and recreation are provided to people who live in residential settings and at home. A wide array of services and supports are also available to families caring for a child or adult sibling with an intellectual disability. Services include case management, mobility training, employment training and opportunities and adult day care.
There are various disabilities that also carry the intellectual disability label, and many people struggle with how to respond once that label is connected to a loved one. Different families will make different decisions. Some may not want to access support, some may want to explore support options for the future, and some will want immediate support.
Important information to know:
Seek Help Promptly: Enrolling in the intellectual disability system is a process that will help that will help you plan for the future. It is especially critical for young people transitioning to adulthood. Because specific services may not be available immediately, families should complete registration and determine eligibility at least 2 to 3 years in advance of anticipated need.
Find Support: The Commonwealth is rich with resources, including advocacy and support groups. Each county may have a different way to navigate the way in which to get the services you need. Call your county Department of Human Services. They will provide you with the information to find the services that will assist families as they navigate the intellectual disability system, as well as provide individual advocacy in absence of one’s own “natural” or personal and community supports.
Limited Resources: Regardless of the funding source for intellectual disability supports and services, resources will always be limited by budgets and the number of people already enrolled. Please note that the counties are only permitted to enroll the number of individuals approved by the Office of Developmental Programs into Waiver Programs.
Individual Rights: Individuals with intellectual disability have the right to choose the services they need, and choose willing, qualified and contracted service providers.
What to Expect: When you call to make an appointment to determine eligibility, you’ll be asked to provide copies of school records and documentation of psychological testing. You’ll want to have as much relevant information as possible. The staff will tell you what information you need to submit. They may ask to contact the school on your behalf. If you agree to this, you’ll need to sign a consent form. You may do this on your own if you prefer.
You Have Choices: Once the eligibility process is complete, staff should help you with registration and choice of the Supports Coordination Services.
(Adapted from Chester County MH/IDD, July 3, 2014)
(Pennsylvania Department of Human Services)