Some people with hypoxic-ischemic encephalopathy (HIE) and associated conditions require financial assistance in order to obtain suitable living arrangements. In some cases, funding is needed to make a home more accessible for a disabled child or adult through modifications, or to purchase a new home with a more accessible design. Others may be able to live in an unmodified home, but require financial support to do so because they are unable to maintain employment and/or have extensive expenses related to in-home caregiving, health needs, etc. Finally, some people with disabilities need funding in order to live in an assisted living center, nursing home, or another facility. Here, we will discuss programs and grants that may be able to help with these scenarios. However, it is important to note that many of these funding sources are very limited, as will also be discussed.
For Home Modifications and Accessible Housing
Housing that is “accessible” to one person may not be to others. Some people with disabilities require only simple home modifications, such as a grab bar installed next to the toilet. Others have more extensive requirements, which may include features such as widened doorways, lowered countertops, ramps, chair lifts, voice-activated systems, and more. Funding for home modifications and accessible housing may occasionally be available from the U.S. Department of Housing and Urban Development. Some home modifications can also be deducted from taxes, depending on whether they are considered medically necessary (for more information, click here to visit the IRS website, and look under “Capital Expenses”). Medicaid may, in certain limited cases, also contribute to the cost of home modifications. The specifications vary state-by-state.
Funding to Live in an Assisted Living Center or Another Facility
There are some types of residential facilities specifically for people with disabilities or complex health needs. The following are a few examples:
- Assisted living centers: Facilities with small apartments for each person. Individuals can use on-site services such as meal provision and help with personal care.
- Group homes: There are many different types of group homes for people with disabilities. Some provide medical care, while others offer limited support to people with mild intellectual or physical disabilities.
- Ranch- or farm-based communities: Communities that provide a structured routine and work typical of a farm or ranch. These programs often have additional support services, similar to those provided in assisted living communities.
- Alternative Family Living: This is an option where an individual with disabilities can live with a family that is not their own.
- Skilled nursing facilities: Facilities where individuals with complex medical needs receive long-term care.
Most of these facilities are expensive, and many have waitlists or limited availability. People with disabilities often end up paying to stay in an assisted living center or another facility out-of-pocket, because alternative sources of funding can be difficult to obtain. Others purchase long-term care insurance (although having a pre-existing condition may complicate this). This type of insurance may cover some options.
Medicare also covers some care options, but only on a short-term basis. Their website explains the rationale behind this: “Long-term care is a range of services and support for your personal care needs. Most long-term care isn’t medical care. Instead, most long-term care is help with basic personal tasks of everyday life, sometimes called activities of daily living. Medicare doesn’t cover long-term care (also called custodial care), if that’s the only care you need. Most nursing home care is custodial care.”
In some cases, Medicaid will cover long-term care in a facility, but this is also very limited. The website longtermcare.acl.gov notes that “For the purposes of Medicaid eligibility and payment, long-term care services are those provided to an individual who requires a level of care equivalent to that received in a nursing facility.”
Although insurance coverage for assisted living centers and other facilities may be restrictive, there are other means of affording these options (see ‘Other Funding Sources’).
Low Income Housing
The Housing Choice Voucher Program (also known as ‘Section 8 Housing Vouchers’) can help low-income people pay rent on an apartment or house. Low-income individuals can also turn to the Supplemental Security Income (SSI) Program to help defray costs of living. For more information on affordable housing, click here.
Other Funding Sources
In addition to the funding sources we have discussed thus far, people with disabilities may pay for suitable housing by taking out private loans, relying on veterans’ benefits (if they have served), or pursuing a lawsuit (if their disabilities stem from personal injuries caused by negligence or medical malpractice). Non-profit organizations may also be able to help people with disabilities find and afford suitable housing. Many are also busy advocating for legislative changes to make housing more accessible and affordable.