Affordable, safe housing is one of the most crucial aspects of a person’s life, especially if that person has a disability. Parents and guardians must plan for this as early as possible to make sure their loved one has a secure and appropriate living situation long after they either become unable to provide care or pass away. Here are some general considerations to keep in mind when formulating a plan. The plan that works best for your family should be affordable in the long term and best suited to your loved one’s disability.
Housing options
You may be caring for your special needs child at home, where are no additional costs for residency, and the setting is safe and familiar. But in most cases, this is not a permanent solution. Inevitably, as parents and guardians age or develop health problems, they will not be able to provide the supervision and care needed. Bringing in around-the-clock home health care may not be affordable.
For people with intellectual or developmental disabilities (IDD), there is an increasing movement away from private or state-run institutions and toward community care. This encompasses a great number of programs, including traditional Group Homes (24/7 supports often provided by non-profit service agency), Community Companion Homes (licensed foster-care like environment where an adult lives in another family's home) and Supported Living (individuals living in their own residence with pull in supports as needed). The names of these types of environments may be different from state to state.
Your city or state may have supportive housing programs. Providers of supportive housing are typically non-profit organizations that contract with federal, state, or tribal governments to provide the housing and services that were formerly provided in institutional settings.
The Arc, a nonprofit advocacy program for adults with IDD, offers an online planning tool that provide insight on a host of issues, including finding accommodation, getting a job, and securing special services.
Financial considerations
It is vitally important to make sure there will always be sufficient funds to pay for your loved one’s housing, and to set money aside without compromising their access to government benefits, if applicable. These funds must be available both during the parent's lifetime as well as after they have passed on. One strategy is to set up a Special Needs Trust (SNT) to hold funds for the care of an individual with disabilities without interfering with their needs-based benefits such as Medicaid. Regulations about using SNTs to pay for housing, including Section-8 housing through government vouchers are especially complicated. Funding an SNT is often done out of the estate of the parents, including their liquid assets, real estate and any life insurance that they may have purchased.
Do it right—and don’t wait
“The best plan is to start early: Apply for Medicaid, find a financial advisor, establish a good credit rating for the person with disability, and then talk to their care coordinators or housing navigators about detailed options,” say Musa Klebnikov and Michele Lawton of Special Needs Advisors LLC, an agency that helps families place their loved ones in living situations. “Everyone has different needs and support systems; therefore, each family needs a different solution.”
Failing to put a plan in place can lead to trauma and stress for the family if something unexpected happens in the meantime. Avoid scrambling to find the best solution for your loved one’s housing. Start planning early and with the right professionals. Be sure to consult with your special needs attorney.
Content in this material is for general information only and not intended to provide specific advice or recommendations for any individual.
This material was prepared by the Academy of Special Needs Planners.