By: Sandi Rosenbaum

As same-aged peers move on to college and toward independent living and financial self-sufficiency, many young adults continue to reside with their parents. For some, this is strictly a financial matter, as many young people working full time cannot afford to live on their own or are saving money toward a future goal. However, many young adults with intellectual and developmental disabilities (I/DD) and/or mental health and other neurodivergent conditions require support and assistance with day-to-day tasks similar to that for a child or teen. Once such a young adult ages out of high school or graduates high school or college, sufficient programming and activities (including work hours) may not be available; scheduling may become less predictable and the person may spend increased time at home, requiring regular or even constant assistance and supervision. Some young adults simply need additional time to mature. However, many people with disabilities will require lifelong support and assistance, whether financial or hands-on, and it may not be realistic or desirable for them to live with family for their entire life. It is important to start planning early as it can take years to identify and implement an appropriate housing solution.

If your adult child cannot live on their own without financial and/or hands-on support, there are a range of alternatives available. Many people live in independent apartments with support staff coming in as needed to assist with needs including daily hygiene, household management, budgeting, social skills, and conducting personal business. Support staff may be contracted individually or shared, potentially as part of a program designed to support a group of people with similar needs who may live in a designated cluster of units within a larger building, complex, or neighborhood. For some, support can even extend to a live-in caregiver or supportive roommate who performs certain duties in exchange for a rent reduction.

Rental subsidies, as well as salary for support staff as described above may be funded in part or in full by public benefits for people who meet disability and financial qualifications through either the New York State Office for People with Developmental Disabilities (OPWDD) or the New York State Office of Mental Health (OMH) through its Single Point of Access (SPOA) program. Regular income, typically from Supplemental Security Income (SSI) or Social Security Disability Income (SSDI), plus any wages, is generally a prerequisite to receive housing placement or subsidy through these agencies. These rental subsidies are designed similarly to the Federal Housing Choice Voucher Program (Section 8), whereby tenants pay 30% of their income as rent in qualifying community housing; the subsidy funds the rest, up to a designated maximum. These programs are known as the OPWDD Housing Subsidy (formerly Individualized Supports and Services [ISS]) or as Supported Housing under the OMH SPOA program. There are years-long wait lists for these services.

Certain young adults may be appropriate for residential transition programs which explicitly teach independent living skills, including budgeting, household management, and negotiating activities in the community, to allow them to progress to independent living with support as described above. These programs generally are designed to last two to three years and are available exclusively on a private pay basis. Other settings are campus-based, designed for people with significantly limited skills and safety awareness to live and work entirely within a structured and secure environment to afford them maximum independence. Some such programs may be available to qualifying individuals through public disability benefits; others are exclusively private pay.

Community group homes with full time or part time staff to provide assistance with daily living and some community activities as well as monitoring and facilitation of medical care from outside providers generally are available only to qualifying individuals with public disability benefits through a Medicaid Home and Community Based Services (HCBS) Waiver program, either through OPWDD or OMH. These certified settings are called Individualized Residential Alternatives (IRAs) within the OPWDD system, either Supervised, with 24/7 staffing, or Supported, with part-time staffing generally in the morning and evening. The OMH system offers Community Residences with full time staff or Apartment Treatment Programs with part time staff. Most certified homes in the NYC metro area and Hudson Valley are operated by voluntary nonprofit agencies under the regulatory supervision of OPWDD or OMH; others are operated directly by the state agency. There are also a small number of people within the OPWDD system living in Family Care, as part of a family who has been certified to care for them, similar to the foster care model. Under the HCBS waiver system, day programming is provided separately and coordinated through a Case Manager (OMH) or Care Manager (OPWDD).

In certified housing, the operator (whether a voluntary agency or OPWDD) is responsible for staffing and operations. While family members have the right to remain involved, they do not have a role in the home’s day-to-day operations. While this is attractive to many families and necessary for people with disabilities who no longer have involved family members, certified placements are increasingly difficult to obtain. For the most part, opportunities arise when a resident of an existing residence has moved on to another setting. The application process and management of wait lists for certified housing placements is handled by city or county mental health departments for OMH, and by Developmental Disabilities Regional Offices (DDROs) within the OPWDD system. While there may be regional differences within the OMH system, OPWDD has a uniform statewide mechanism. The DDRO will review materials and assign the person a designation of Emergency Need, Substantial Need, or Current Need, based upon their individual circumstances. Each certified setting must report vacancies to the DDRO as they arise, and each agency with available vacancies must consider all Emergency Need applicants within its region (and beyond, if requested) and can only move on to screen candidates with Substantial Need once they have established that they cannot appropriately serve any Emergency Need applicant.

Even an Emergency Need designation does not guarantee a quick resolution – OPWDD has stated that Emergency Need candidates can, on average, expect to be placed within six months, while some with more unique needs can wait years despite an Emergency Need designation. As most vacancies arise in established homes with longtime residents, certain aspects of the established residence may be incompatible with the needs of the CRO applicant. When appropriate housing is available, it may be far from family members and from the person’s existing support system, presenting difficult choices.

Because of the difficulties in obtaining certified housing, an increasing number of people with I/DD, even those with demonstrated need for the coordinated supports provided in a certified setting, have chosen to live in non-certified housing, typically an apartment or other rental. The Self-Direction model has allowed for the creation of OPWDD residential budgets allowing a live-in caregiver to reside rent-free in an additional bedroom or, for those who require less immediate hands-on support, paid neighbors who receive a stipend in exchange for a commitment to be on call to provide specific supports. Paid neighbor and live-in caregiver responsibilities can be personalized to the individual needs of the person with a disability. Self-direction budgets also typically include Community Habilitation staff who come in to work with the person in their home on daily living and household management skills as well as participating in educational and recreational activities and transacting business in the community, as needed. In addition, qualifying people may receive Medicaid Home Health Aide services separate from the waiver. An OPWDD Housing Navigator can assist with this planning and people receiving Self-Directed services can include Housing Navigation services in their budget.

Identifying an appropriate housing solution for your loved one with a disability is a complicated and long-term project. Applying for OPWDD or OMH/SPOA benefits can be a daunting task. If you require assistance, contact an experienced Special Needs Planning Lawyer today.