The final major hurdle for getting a young adult with special needs (YASN) into his/her own home when they come of age (or are otherwise prepared) is getting the necessary support services arranged. Simply put, very few families can provide the support that a YASN needs, either personally or by paying an agency to provide it. Almost all of them will have to turn to financial assistance to support their YASNs. Fortunately, that part is easier today than it has been in previous decades. Unfortunately, it is still not without its challenges.
The primary source of support service funding for most YASNs is Medicaid. In years past, Medicaid only paid for certain specific types of disability, but recently, a variety of ‘waivers’ (because they waive the usual rules of what Medicare will pay for) have come into existence. The Home and Community-Based Waiver has given states leave to create programs that pay for in-home or community-based services of all kinds.
Of course, that doesn’t mean every state did — Medicaid provides the money, but the states themselves must create and fund the programs. There’s no guarantee that your state has a program that applies to your specific special needs. It also doesn’t mean that you can get into an existing program; nearly every state has a waiting list for most services relating to adults with special needs.
Unfortunately, when you get into the other levels of funding, it rapidly becomes impossible to talk in anything but the broadest terms. Every state, county, and community has its own unique opportunities and obstacles. It is safe to say this much: you should sit down with your family and research each of these potential sources of funding:
• Family-paid support
• Private funding
• Private health insurance
• State-based funding
• Local funding
• Grants and foundations
What Can I Expect to Pay?
In one respect, the question of how much your support services will cost varies enormously depending on your precise needs and on where you live, it is still one worth talking about. Geography matters quite a bit — for example, in Georgia, a family can expect to spend an average of $972/year out of pocket raising a child with special needs to adulthood; in Massachusetts, it’s only $562.
Similarly, as a nationwide average, for a YASN-housing environment, it costs:
• $20/day for non-medical ‘supervisory’ visits at home,
• $61/day for 6-hour adult day care,
• $165/day for 24-hour non-medical services in a group home setting,
• $456/day (or $19/hour) for in-home medical care, and
• $634/day for 24-hour services in a group home setting.
These numbers can vary by 50% in either direction, as you might assume by looking at the Georgia vs. Massachusetts numbers above, but they can serve as a rough estimate of what you should be looking for. Obviously, the less you need in terms of support, the less you have to pay — but getting the support you need should be your primary concern, not saving money. Don’t make it harder by trying to skimp on your support structure — there will be plenty of other challenges to face once you do get set up in a home with the support you need.