Approximately 90% of adults with autism are not employed full-time or are underemployed, and more than 80% of young adults with autism live in the family home (1). Nationally, the cost of a studio apartment is 90% of the federal SSI payment rate (2). Finding workable housing solutions for individuals with autism is a daunting challenge that will get worse as increasing numbers of young people enter adulthood. While Medicaid waiver programs, such as that in Pennsylvania, have been used to create innovative housing solutions, the difficulty with waiver programs is that there are numeric caps on the number of individuals who can participate.
State Medicaid services are not limited to waivers, however. States also offer a menu of services referred to as “state plan services.” Unlike waivers, state plan services are not capped. In some states, these services are sufficient, when cobbled together with other benefit programs and family resources, to form the basis of individualized housing solutions. In Massachusetts, examples of state plan services include Adult Foster Care, Adult Family Care, Group Adult Foster Care, and Personal Care Attendant services. Importantly, individuals do not need to meet an institutional level of care to qualify for state plan services (3).
It is up to each state to determine what services it will offer through the state plan, subject to approval by the Centers for Medicare and Medicaid Services (CMS). Historically, states have been conservative in choosing what services to offer, as state plan services must be provided to anyone who qualifies. Some of the services available under the state plan in Massachusetts are only available as waiver services in other states. However, the Affordable Care Act made changes to Section 1915(i) of the Social Security Act (4). These changes provide a new incentive for states to offer certain services through the state plan: states can now choose to define certain populations to receive services. For example, a state might decide to offer Adult Foster Care to adults on the autism spectrum. This would mean fewer individuals would qualify than if the state were required to offer Adult Foster Care to all adults needing assistance with activities of daily living, regardless of diagnosis. Further, a state can have multiple targeted 1915(i) benefits: a state could choose to have a benefit that provides life coaching to individuals with Asperger’s, as well as a benefit that provides Adult Foster Care to those with more intensive support needs. An opportunity exists for advocates on the state level to encourage their state to apply to CMS for a 1915(i) amendment to their state plan (5).
State plan benefits under 1915(i) have one major limitation: they can only be used to pay for services, not for room and board. That is why they need to be supplemented with other available benefits, and with family resources. SSI limits what resources can be used to pay for room and board outside of the SSI check; if earned income exceeds $65 per month, or unearned income exceeds $20 per month, the amount of the SSI check will be reduced. However, SSI does permit the use of certain additional benefits to pay for room and board. Section 8 housing vouchers allow an individual to pay 30% of his or her income for rent, while the balance of the rent is paid to the landlord by the Dept. of Housing and Urban Development. Another program allows individuals who are working even part-time, and are from low-income households which do not own their home, to save money for housing through Individual Development Accounts (IDA); the amount saved is matched by as much as 3:1 (6). The Supplemental Nutrition Assistance Program, or SNAP, benefits (more commonly known as food stamps) may be used to pay for groceries.
Unfortunately, the waiting list for Sec. 8 vouchers exceeds a decade in some parts of the country, and federal sequestration promises to make the wait longer still (7). However, it is still possible to make productive use of the wait. One scenario available to Massachusetts families is as follows: upon turning 18, an individual signs up for as many Sec. 8 waiting lists as possible (likely options are the Centralized Waiting List, a regional non-profit waiting list, and any lists maintained by local housing authorities not participating in the Centralized Waiting List). He or she also applies for SSI. Once SSI is received, the individual should start to receive MassHealth (Medicaid). If the individual needs at least prompting (not simply reminders) with at least one activity of daily living, a family member who is not a legal guardian can apply to become the individual’s caregiver through Adult Family Care (AFC), a Medicaid state plan service. (One common arrangement is for one parent to become the guardian, while the other becomes the AFC caregiver.) The AFC caregiver will receive a tax-free stipend of about $8,000 per year. If the caregiver saves the stipend, by the time the individual receives a Sec. 8 voucher, $80,000 or more may have accrued. This money can then be used to make a down payment on a home or condo, which is then rented to the individual. The rent payment, including the amount paid via Sec. 8, may then be used to pay the mortgage. Care for the individual in the new home may be paid for via Adult Foster Care, Group Adult Foster Care, or Personal Care Attendant services, depending upon the living situation and needs of the individual. One additional program worth mentioning in this context is the Fannie Mae HomeChoice mortgage, which is open to individuals with disabilities or their family members (8).
Other options may be devised. For instance, three individuals with disabilities saving $56 each per month through IDA accounts might be able to walk away with $24,000 among them for use as a down payment. While not very much for a conventional home loan, that amount could go a long way toward government-owned real estate, if purchased for as little as 3% down via a Fannie Mae HomePath mortgage (9).
Groups currently in existence in Massachusetts are working on a number of models, including: a cluster of 3 group homes on a cul-de-sac with shared services paid for through Group Adult Foster Care; an old Victorian house, serving 7 individuals with two live-in care givers, with services covered by Group Adult Foster Care and housing paid for through project-based Sec. 8 vouchers provided by a local housing authority; and two families splitting the rent on a three-bedroom apartment, with a live-in caregiver receiving a stipend from Adult Foster Care.
While there is room for creative use of existing federal and state programs to innovate a variety of individualized housing options, advocacy will be necessary to make these a reality in many parts of the country. Revisions to Section 1915(i) of the Social Security Act open up new possibilities for families and service providers to fund services through Medicaid state plan services, but only if states can be persuaded to respond to the incentives created by the Affordable Care Act. Individual Development Accounts will need to be more broadly funded; using tax credits instead of budget line items to fund IDA programs may be a promising avenue for states to pursue. Finally, the threat sequestration poses to the Sec. 8 program will need to be recognized and remedied. The need for new approaches to housing is generally acknowledged, but often little more than lip-service is paid, as the barriers are seen as intimidating. Smart, effective advocacy on the state and federal level can serve to change this.
Catherine Boyle may be contacted at 617-893-8217, or email@example.com. To learn more about Autism Housing Pathways, visit www.autismhousingpathways.net
4 – Ibid.