At the 2019 annual meeting of the Academy of Special Needs Planners (ASNP), special focus was placed on helping clients find housing solutions for their loved ones with special needs &/or disability. Here are the details.
With traditional residential options for persons with special needs limited by long waiting lists, and with big changes on the horizon for integrating more people with special needs into the community, a session at the 2019 ASNP Annual Meeting explored alternative residential options that maximize all available public and private resources. Panelists were Chicago and Worcester, Mass., ASNP member attorney Terrie Varnet, who has a daughter with special needs; Ann Sickon, executive director of the Center for Independent Futures; and Jacqueline Eddy, director of the Center’s New Futures Initiative.
Any exploration of housing options should begin with asking the person with special needs what type of living arrangement he would like, Varnet advised. “Even the most profoundly disabled can convey what he wants,” she said, and it’s important to find a living arrangement that will be most comfortable for the person. Some situations may require creating a public/private partnership, one where the family pays for some of the expenses and the government pays for some, and there may be a long wait for some resources.
Referring to her own family’s experience, Varnet explained how a public/private partnership might work. An array of public benefits enable her daughter to live independently in a home bought by Varnet and her husband, providing the supports, care, and transportation her daughter requires. Here are some benefits that may be available and how they might be used.
Turning age 18 may qualify an individual for Supplemental Security Income (SSI). SSI provides the recipient up to $771 a month (and more in some states), depending on various factors such as an individual’s living arrangement, marital status, categorical eligibility and income. Some states may reduce that to $30 a month where the beneficiary does not pay rent and a fair share of living expenses. If the SSI beneficiary lives at home, parents may want to charge their child rent and expenses until the child moves out, and, if the rent is not needed for their own expenses, use the money to purchase premiums for long-term care insurance, payable to the beneficiary’s SNT upon the parents’ death.
Don’t be shy about getting the full SSI check because it can make a difference, especially when the beneficiary moves out on her own. Moreover, there may be other benefits attached. For example, in Massachusetts SSI beneficiaries may receive reduced electric and telephone bills.
Keep in mind that child support is counted by the Social Security Administration as unearned income; irrevocably assigning it to a first-party SNT avoids deeming, while assigning it to an ABLE account does not.
SSDI and DAC
Social Security Disability Income (SSDI) might be available to an individual on his own work record; Disabled Adult Child (DAC) benefits might be available on his parent’s work record. The younger someone begins to work, the shorter the work timeframe is required before they are eligible for SSDI.
Eligibility for DAC benefits requires that the child’s disability occurred before he turned age 22 and that the parent retires, becomes disabled, or dies. Planners and families are encouraged to document the disability as early as possible and to keep that evidence to demonstrate eligibility throughout the beneficiary’s lifetime. The DAC will receive 50 percent of the parent’s primary insurance benefit when the parent retires, increasing to 75 percent of the primary insurance benefit when the parent dies.
Individuals who receive SSDI or DAC benefits are eligible for Medicare two years after receiving the first check. In a few instances, DAC beneficiaries may immediately qualify for Medicare. Importantly, an SSDI or DAC beneficiary may also qualify for SSI, entitling her to receive Medicaid, too, with Medicare acting as the primary insurance. Varnet’s daughter receives both Medicare and Medicaid benefits, and her live-in caregiver is paid for by Medicaid Waiver, an expense that otherwise would require private pay.
The Section 8 housing program run by the U.S. Department of Housing and Urban Development (HUD) provides housing assistance to those meeting certain income requirements; it is not a disability program. “There is a huge waiting list for Section 8,” said Varnet. “Get on the waiting list. If it takes 13 years, it takes 13 years.” Those qualifying for the program may receive a voucher that pays generally the difference between 30 percent of an individual’s income and the HUD Fair Market Rent (FMR). The catch is that HUD’s FMR is low and finding available properties to rent can be difficult.
Where the voucher can be used depends on whether it is a portable or a project-based voucher. Portable vouchers are attached to the person to rent in the community and, after the first 12 months, can be used anywhere in the U.S. Project-based vouchers are attached to the real estate, to be used only for the housing unit for which it was issued. After the first year of receiving Section 8 project-based assistance, the recipient receives priority for a portable voucher.
Generally, HUD’s rules state that homeowners cannot rent to an immediate family member under Section 8. However, a little-known rule provides that a disabled family member can ask for accommodation under the Americans with Disabilities Act (ADA) and then qualify to use her Section 8 voucher in a family-owned residence.
Varnet’s daughter applied for Section 8 several years before the home in which she lives was bought. The voucher now helps defray her living expenses. Owning the home rented to a family member with a disability creates a few benefits when utilizing Section 8 vouchers. Rent can be controlled, keeping it within HUD’s prescribed FMR; there is stability for the “tenant”; and there is the financial benefit of the voucher itself.
Supplemental Nutrition Assistant Program (SNAP) – aka food stamps — provides some limited assistance with food purchases for low-income persons. To qualify for SNAP, a person with a disability’s gross income may not exceed 130 percent of the poverty level nor may his resources exceed $3,500, with some resources excluded from consideration. Varnet’s daughter receives $28 per month.
Energy assistance programs may be available to help low-income individuals pay for heating their residence. In Varnet’s daughter’s case, two free full tanks of heating oil are provided every year – amounting to a huge savings in New England.
Money from ABLE accounts can be used to pay the rent — a Qualified Disability Expense — for someone living at home or independently, avoiding a one-third reduction in one’s monthly SSI benefit.
A separate third-party SNT with broad distribution rights combined with some or all of the benefits listed above can make independent, community living possible from a financial perspective.
Center for Independent Futures
The Center for Independent Futures (CIF) is a family driven, Chicago-based nonprofit that works to provide residential living options to people with special needs based on what they can and want to do rather than focusing on what they cannot do. CIF’s goal is to prevent those with disabilities from being isolated from the community by creating residential solutions that allow them to live, work and be part of the community.
The non-profit helps to integrate people with special needs into the community by creating non-institutional living environments such as multi-person residences, mixed-use commercial/residential buildings, and affordable condos for people with disabilities. “We were able to move the price of a condo from $250,000 to $150,000 for individuals to purchase,” said Sickon, “creating five affordable units in a 15-unit condo building.” “Community builders” live in each building to connect with the residents and neighbors on a daily basis and to help the individuals with disabilities succeed in the community.
CIF also assesses the supports that an individual needs and then provides individual services, training and consultation to schools, agencies, and family groups. They work with community groups throughout the country, in a variety of settings.
Big changes are under way, adding urgency to CIF’s work. Individuals with disabilities are living longer and new regulations from the Centers for Medicare and Medicaid Services (CMS) that require individuals with special needs to be fully integrated into the community take effect in 2022. Traditionally tied together, CMS is working to separate housing from services, allowing individuals to receive services in the community to the same degree as individuals without special needs. Individuals will be free to obtain the specific services and service providers they need and want regardless of where they live, and to choose housing based on residential preference. People will be able to live in their homes with the freedom to hire and fire the service providers they need and want. As a result, CIF foresees even greater need for housing, services, and community access. Eddy shared how CIF’s New Futures Initiative is working in communities across the U.S. to answer that need.
For the PowerPoint for this session, click here.
To view all the materials from the 2019 ASNP Annual Meeting, click here.