Twenty-five percent of U.S. adults live with a disability, according to the Centers for Disease Control and Prevention. Experts claim that those with intellectual and developmental disabilities lack long-term plans for loved ones, particularly when family members can no longer access government services or provide daily care.
The lack of planning is the perfect combination of poor planning and a less-than-sufficient social safety net that advocates fear would result in a serious crisis. Disabled family members who can no longer live independently have any choice but to be placed in nursing homes or state-run institutions.
The Center on Developmental Disabilities at the University of Kansas found that close to 75 percent of Americans with disabilities reside with a loved one that serves as a caregiver. Of those, 25 percent who provide care are 60 or older.
The lack of future planning is a problem, with almost half of families with disabled loved ones failing to take those necessary steps. Those that do fail to update the “living documents” based on particular situations and changing circumstances.
Various obstacles prevent planning based on multiple reasons, including:
- Financial limitations
- Resistance to difficult conversations
- Lacking knowledge of government services
A complicated process
Admittedly, the process is complex, with countless questions surrounding health needs, preferences, activities, and where they want to reside. Experts see it as a potentially intergenerational crisis for parents growing older and offspring with and without disabilities.
The complex nature of state and federal programs suffers from serious gaps that present challenges for families planning on an unreliable system.
Medicaid provides compensation for home settings in addition to a formal long-term plan. However, programs vary based on the state, with all dealing with overly lengthy waitlists. Queues number in the hundreds of thousands nationwide. Even upon qualifying, staffing shortages are persistent, and federal funds are limited at best. The underinvestment in disability services further lengthens the process.
Ultimately, a carefully crafted and continually updated long-term care plan is the best option to avoid the wait times that come with government bureaucracy.