Did you know thousands of adults in Virginia with a developmental disability who are included in the Settlement Agreement population are living in their own home in the community with various supports, including a Medicaid Waiver? You can, too.
Eligible individuals can access dedicated housing resources that have been made available to help adults in the Settlement Agreement Population who want to live in their own home in the community with supports.
The Path to Housing
Start early
Preparing for integrated, independent housing takes a LOT of time and energy, and transitioning from the family home to a new home of one’s own does not go smoothly when you are in “crisis mode.” Families who successfully transitioned their son or daughter with a disability emphasize that they began planning the move when their child was 20-30 years old. The process often takes several years. This slow, methodical transition enables families to see how the new arrangement functions, to work the kinks out, and to make realistic sustainability plans.
Build a strong circle of support
Families with strong circles of support relied on these networks to help with many facets of the transition to integrated, independent housing. Some used their network to help find landlords, and others used it to help find caregivers or roommates. Still others accessed their network to help them navigate different systems, including their local public housing agency’s Housing Choice Voucher program or to obtain assistive technology and environmental modifications using a Medicaid Waiver for people with developmental disabilities. Some families involved relatives and friends in stocking their loved one’s new home full of furniture and household supplies. Do not be shy: this is the time to let people know what you are trying to do and to rally their support for your family!
Research the impact of transitioning to integrated, independent housing
When a young adult with a disability moves out of the family home, many government programs and private health care insurers no longer consider the individual a “disabled dependent.” Many families did not realize this, and they were surprised by the impacts of this change in status: some negative and some positive. Before you take any serious steps toward transitioning an individual out of the family home to their own housing, check into these issues:
Health insurance
If the individual has private health insurance, ask whether the individual can retain coverage if he or she moves out of the family home. Some individuals who were covered under their parents’ policy as disabled dependents have lost private or military health insurance coverage when they moved out because the health insurer no longer considered them “dependent.”
Supplemental Security Income (SSI)
An individual who receives SSI and lives with family does not receive the full SSI benefit if the family does not charge them rent. The monthly SSI benefit is reduced because the family is providing the individual “in-kind support and maintenance” for housing. However, when the individual moves out and pays for housing on their own, the individual may qualify for the full SSI benefit even if he receives rent assistance. Conversely, consider an individual who lives with their family and receives the full SSI benefit. If they move out and their family provides additional financial support to help them pay the monthly rent for their new apartment, then the individual’s monthly SSI benefit could be reduced because their family is providing “in-kind support and maintenance” for housing. Rent subsidies such as Housing Choice Vouchers and the State Rental Assistance Program do not have an impact on SSI benefits. Likewise, ABLE accounts can be used to help pay for housing without impacting SSI benefits.
Eligibility for other public benefits and programs
Once individuals establish their own households separate and apart from their parents, they may qualify for public benefits such as Supplemental Nutritional Assistance Program (SNAP) or heating and cooling assistance through the Department of Social Services. They may also be eligible for Lifeline, which provides a subsidy for cellphone or Internet service.
Eligibility for other public benefits and programs
Once individuals establish their own households separate and apart from their parents, they may qualify for public benefits such as Supplemental Nutritional Assistance Program (SNAP) or heating and cooling assistance through the Department of Social Services. They may also be eligible for Lifeline, which provides a subsidy for cellphone or Internet service.
Good caregivers are hard to find
Whether using an agency or directly hiring people to assist individuals in their homes, it is difficult to find and retain knowledgeable, trustworthy, professional caregivers. Caregivers move from one job to another seeking better wages, benefits, hours, commutes and working conditions. If the caregiver’s services are funded by Medicaid, it may be hard to offer more competitive pay. For example, Medicaid has strict rules about not supplementing an attendant’s rate of pay for hours worked in its consumer-directed Waiver services. Low wage rates make it hard to find and retain attendants, especially in areas with a high cost of living. Families have found ways to make working conditions more attractive by reimbursing attendants for out-of-pocket expenses like gas, meals, or entry fees for recreation activities incurred on the job. Other families hire the same attendant privately at a higher rate of pay for additional hours not covered by Medicaid consumer-directed waiver services. Some families have helped individuals secure a reasonable accommodation for a live-in aide through rent assistance programs. They offer the attendant free rent in exchange for providing essential care and supports. The attendant is still paid for early morning or evening hours worked and can attend to the individual’s safety and well-being during sleeping hours in an emergency.
Back up the back up
Parents have learned that naming themselves as Plan B is often not enough in integrated, independent housing: they may be out of town, ill or unable to provide the needed care. It is critical to have a more comprehensive game plan for who will “sub in” if the live-in aide or the visiting caregiver cannot make it because of a weather emergency, illness, sick child, etc. It is also important to know who can serve as a temporary replacement if caregiver turnover becomes an issue. If you currently use consumer-directed services, consider getting to know a few agencies that staff the same service and find out what their capacity is to ramp up supports. Also, get to know other families who have individuals in integrated, independent housing in the community and consider forming a “back-up cooperative” with qualified people who are on call in case someone needs a caregiver to sub in.
Be prepared for your role to change
Many parents found that their roles changed dramatically when their adult child with a disability moved into integrated, independent housing. They were no longer “primary caregivers,” but they had instead become “care coordinators.” The responsibilities include scheduling caregivers, ensuring they arrive on time, monitoring the quality of care, making sure they communicate with the next “shift” as needed, signing timesheets as needed, and enforcing employment agreements. This role can be a difficult adjustment for parents. First, it takes time to help the individual to adjust to a new home and to help the caregivers become familiar with the individual’s unique needs, develop a good communication system, establish a routine schedule, and develop some basic protocols. Second, parents sometimes expect caregivers to support individuals the same way they did. Third, as individuals began to feel comfortable living in their own places, they would sometimes say during the course of a visit to family, “I am ready to go to my house now.” This was a bittersweet moment for many parents, who realized that their son or daughter with a disability had truly left the nest.
My Own Home Guidebook
The My Own Home guidebook provides information about independent housing options and the resources available to individuals with developmental disabilities in the Settlement Agreement Population.
Searching for Housing
If you, a family member, or someone that you know or support is interested in living in their own rental housing and searching for housing, Virginia Housing Search is a free resource that may help with locating housing that meets individualized needs and budgets.
Additional Housing and Housing Search Resources:
Housing Choice Voucher Set-Aside
The Housing Choice Voucher program is the federal government’s major program for assisting very low-income families, the elderly, and the disabled to afford decent, safe, and sanitary housing in the private market. Housing assistance is provided on behalf of the family or individual so participants can find their own housing, including single-family homes, townhouses, and apartments. Housing is not limited to units located in subsidized housing projects.
The U.S. Department of Housing and Urban Development (HUD) approved Public Housing Agencies (PHAs) to make vouchers available to the individuals with DD in the Settlement Agreement population by set-aside or preference. Individuals are referred by support coordinators to DBHDS. DBHDS verifies individuals are in the Settlement Agreement population and have permissible household compositions. DBHDS then sends the referrals to local PHAs, where individuals apply for Housing Choice Vouchers.
State Rental Assistance Program
The State Rental Assistance Program (SRAP) serves individuals with developmental disabilities in the Settlement Agreement population who want to live in their own rental housing. The program is designed to provide rental assistance to single person families that meet the program eligibility criteria, so they have the means to lease private market rental housing that meets their needs.
Individuals will have the opportunity to choose where they live, with whom they live, and who supports them. Services and supports will be provided through sources separate from their housing, including Medicaid Waiver-funded home and community based services, natural supports, privately paid supports, and other community resources.
Flexible Funding
DBHDS makes Flexible Funding available to help individuals with developmental disabilities overcome one-time financial barriers to obtaining and maintaining independent housing. Six Community Services Boards administer this program in the five DBHDS regions of the state. Individuals and families should contact their Support Coordinator/Case Manager for an application.
Fair Housing Rights
When people with developmental disabilities apply for or live in housing, they are sometimes treated in ways that make it difficult to access or use housing. This unfair treatment is called discrimination. There are federal and state laws that protect the rights of people with disabilities to “fair housing.” Here are some resources that can help you learn about fair housing rights for people with disabilities.
Virginia Fair Housing Office –provides information about Virginia’s Fair Housing law, investigates housing discrimination complaints and pursues dispute resolution outside the courts when possible.
Housing Opportunities Made Equal of Virginia – provides counseling on fair housing rights, investigates discrimination complaints and assists individuals with determining the best course of action to protect their rights.
HUD’s Title VIII Fair Housing Complaint Process – file a fair housing complaint through the U.S. Department of Housing and Urban Development.
Landlord -Tenant Rights
The Virginia Residential Landlord and Tenant Act (VRLTA) handbook provides information on the rights, remedies, and responsibilities of landlords and renters concerning the rental process. Before signing a lease, prospective tenants should read and understand the terms of the contract. Consulting a lawyer or the landlord for clarification of the rental agreement is advisable.
Valegalaid.org offers helpful articles on a variety of topics such as leases, security deposits, late rent, and preventing eviction.
Housing Opportunities Made Equal of Virginia (HOME) – offers classes on the ins and outs of renting, tips for tenants, and other helpful documents for renters.
Success Stories
Videos Highlighting People in the Settlement Agreement Population Living in Their Own Rental Housing
This video series was filmed in the Summer of 2016 to highlight people with developmental disabilities living in integrated community settings. The series was completed by The Arc of Northern Virginia in combination with videographer David Buerk and made possible with grant funding from the Virginia Housing Development Authority and DBHDS.
Brian is a brain injury survivor who lives in his own apartment, along with a live-in aide.
Gail and Esther are women with developmental disabilities who live in an affordable housing apartment complex. They have their own apartments and are close friends.
David and Rory live with a third roommate in a high-rise condo. They moved there from institutional settings and love the freedom they have in their new home.
Rogan lives in a home that his family initially purchased with a low interest Virginia Housing and Development Authority loan. He has a live in caregiver who has two young children who also live in the home.
Theresa is a brain injury survivor who has lived in her own apartment for many years. She uses a housing choice voucher to make the rent affordable and assistive technologies to help her around her house.
Robert just moved to his very first apartment, using a housing choice voucher. He works and is very involved with his family.
Contact Information
HousingReferrals@dbhds.virgnia.gov
(804) 225-2740
