As children we dream of what we want to be when we grow up and of all the places we will go. For many, this dream includes where we will live and what our home will look like. Coming of age and moving out of the family home is seen as a rite of passage to adulthood but for someone with a disability, their dream of independence can bring added challenges. For them, leaving the family home may not be an option.
The stark reality is that of everyone with intellectual and developmental disabilities in the United States, it is estimated that 89% are supported by family members with only 13% receiving support services while residing outside of their family home. While the Indiana Medicaid Home and Community Based Services (HCBS) Waiver program provides individualized supports to assist individuals, it’s estimated that 75% of those living at home do not receive any support services. This means that a family member must provide for all of their loved one’s needs for their lifetime. As parents and other family caregivers grow older, their need for help and support becomes even more urgent.
When it comes to caring for a family member, most people think about the need to care for elderly parents. But a parent taking care of a child who is unable to move out on their own is often more long term and comes with its own unique challenges. Parents in their 70s and 80s continue to struggle to care for their adult child. In many cases, their child is not eligible to enter a Community Integration and Habilitation Waiver Program until the death of their parents as their primary caregiver, until their parents are over 80 years old or until they are unable to care for their child and there is no other family member to care for them.
That’s why AWS Foundation is working to increase access to housing for individuals with intellectual and developmental disabilities and their families that reflects their personal needs, wants and abilities. We understand why it’s important to support grant making to organizations providing home modification programs such as NeighborLink that give individuals and families the ability to age in place, offer assistive equipment or upgrade areas of their home. For aging parents and individuals living with mobility impairments, behaviors or sensory issues, a home with universal design features such as stepless entrances and wider doorways, an open floor plan, specialized lighting, hard flooring and accessible bathroom features are not just convenience items but may be required for daily living.
We believe that every individual should have the opportunity to live in the home of their own choosing that supports their desire to live as independently as possible. Whether an individual’s dream is to navigate their family home without assistance or, if they do have the opportunity to live independently, working to expand shared living opportunities, AWS Foundation wants to help.