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.
For people with intellectual or developmental disabilities (IDD), there is an increasing movement away from private or state-run institutions and toward community care. Fifty years ago, most people with even moderate special needs were institutionalized throughout their adult lives. Now, thanks in part to societal changes and decades of litigation, most people with special needs, including those with very severe special needs, live in some type of community setting. In fact, the U.S. Supreme Court has specifically ruled that people with special needs who receive government benefits must be housed in the least restrictive possible setting. These programs offered today encompasses treatment provided in group homes to interaction with a social worker to job training and other vocational training centers.
Living With Parents or Other Family Members
Many adults with special needs, especially young adults, may live with their parents or other family members. There may be no additional costs for residency, and the setting is safe and familiar. People with special needs who live with their parents don't have to experience the sometimes stressful transition into a different type of housing when they become adults, and they are usually surrounded by caregivers (their family members) who have experience with their specific special needs. In many cases, Medicaid funds can be used to pay family members who provide care for their children in their own homes.
But as any young adult will probably tell you at one point or another, living with one’s parents is not always a great solution. In some cases, the child’s special needs will be more difficult than what the parents can handle. In other cases, a child’s parents may be a bad influence on the child or may even abuse the child or steal his/her government benefits. Depending on the person with special needs’ level of social interaction, they may not have the opportunity to meet a lot of other people if they are constantly surrounded with the same family members.
In addition, as parents age, it may become impossible for them to care for their child anymore, and bringing in around-the-clock home health care may not be affordable. The transition from a lifelong residence could be more traumatic for the child than if they had moved out when they were younger.
Group Homes / Supportive Housing
Many people with special needs choose to live in supportive group homes with several other people with special needs. Depending on the program, these homes could be staffed with counselors, other social workers, and medical care personnel. The programs can help the residents live on their own, or, in some cases, the residents live without live-in assistance.
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 accommodations, getting a job, and securing special services.
Group homes come in many varieties and can be paid for in many ways, including private payment or state programs for people with disabilities. Group homes can be a good option for people with special needs who don't require more advanced care but who cannot live independently. In many cases, group homes also provide a social setting for the residents that they would not otherwise have if they lived with parents or on their own.
Assisted Living Facilities
Some people with special needs, especially older individuals, live in assisted living facilities. Although the term “assisted living” has come to mean a lot of things, in general assisted living facilities house residents in their own apartments within a building or complex of buildings. The residents can cook in their units or eat in a communal dining hall, and they receive nonskilled care in their units, including assistance with bathing, cleaning, and sometimes administration of medicine. Some assisted living facilities specialize in treating people with dementia or other neurological conditions.
Skilled Nursing Facilities (Nursing Homes)
If a person with special needs requires around-the-clock skilled medical care, he/she may need to live in a skilled nursing facility if it is impossible to provide that care at home. Although nursing homes are the last resort for most families, in some cases they can be the most appropriate option for a person with severe special needs because there is constant supervision of care and the person’s family members do not have to spend all of their time caring for their loved one.
Skilled nursing facilities are incredibly expensive, often costing more than $10,000 a month. In many cases, an individual with severe special needs and minimal assets will qualify for Medicaid coverage that will pay for care in a skilled nursing facility.
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. One strategy is to set up a special needs trust. Special needs trusts can own homes for their beneficiaries or pay for a beneficiary’s rent in a private apartment. In many cases, this is a very flexible option for the beneficiary, since the trust can also pay for services to help the beneficiary live independently. However, home ownership by a trust comes with a large set of responsibilities. Regulations about using SNTs to pay for section-8 housing through government vouchers are especially complicated. Make sure you a working with a qualified professional who understands the rules and regulations on distributions from a special needs trust.
Another crucial planning tool is life insurance for the parents or guardians, if they qualify. Even term insurance will provide protection and immediate cash in the event that a parent dies unexpectedly during the term of the life insurance. Often times, permanent life insurance is considered as a funding vehicle for a special needs trust. Other assets, such as the proceeds from the sale of the family home, can be set aside in an SNT to pay for a loved one’s care and support into the future.
Do It Right — and Don’t Wait
Procrastinating on this very critical piece of the planning process can be devasting for the person with a disability, the very one you are trying to protect. It can lead to trauma and stress for the family if something unexpected happens and there is not plan. Start your plan early, apply for appropriate benefits such as Medicaid and SSI and talk with professionals such as care coordinators, housing navigators and special needs planners to assist you in building out your plan. Every family will have their own unique solution. Avoid scrambling to find the best solution for your loved one’s housing. Start planning early and with the right professionals.