7 Tips for Navigating Your Way Home

September 13, 2020

Thinking about where your loved one will live and who will provide care is daunting, but if you break it down into steps, it becomes manageable. Starting early is key.

1. Apply for State I/DD services

As soon as possible, apply for state services. In many states, the waitlists are years long. The process of applying for services takes time. Some families choose not to waste their time applying because they know that they will not likely receive any due to lack of funding. They may also know that many services are funded by Medicaid and their family is not financially eligible. But, being deemed eligible, whether or not your son or daughter receives services, is important. It’s important for your state to know about and count all eligible citizens. Funding is often based on the number of people waiting for services. Being deemed eligible may also allow you to get your loved one on waitlists. You may not be financially eligible as a family, but once your son or daughter turns 18, they will qualify financially based on their own income. Establishing their need for these services while they are still children, living at home, will help to ensure they have the benefits available for them when they become adults. To find out where to apply in your state, go to https://www.nasddds.org/state-agencies/.

2. Find compatible families

When your child is still enrolled in high school or in a high school transition program is a good time to think about potential roommates and family partners. Many families are focused on finishing school, then getting a job, and THEN they will start planning for housing. We encourage you to start talking to families of fellow students about housing while still in the school system. This is the time you may have the greatest access to other families. Ask your school administrators to host an evening on housing and talk to other families about their vision of housing. Collect names and phone numbers. If your son/daughter is already graduated from the school system, it’s not too late. Does your child participate in sports or other social groups? While you are sitting in the stands watching a Special Olympics practice or event, talk with fellow parents about housing. Is there a schoolmate or teammate that your son or daughter connects with? Sit with his/her parents. Get to know them. You are looking for potential roommates and parent partners. Do the parents share vision and values with you? It’s critical that you choose parents you can work with. The nature of disability is not as important as the chemistry between your child and his/her friends AND the chemistry between you and the other parents. Our roommate matching platform is a way to connect with other families.

3. Apply for Supplemental Security Income (SSI) and Medicaid

When your child turns 18, it’s time to apply for SSI on their behalf. Most state services are funded by Medicaid. Medicaid is means-tested. When a child is under 18, the parents must be financially eligible. But, once your child is 18, your son/daughter can qualify for Medicaid based on their own income. In most states, Medicaid comes automatically with SSI as long as your son/daughter doesn’t have assets in excess of $2000. Some families don’t apply for SSI because they have financial means to provide support. What they don’t know is that their son/daughter may not be eligible for services without Medicaid. In most states, Medicaid funds services like personal care services and job support that are essential for many young people with disabilities. Partners4Housing can help you navigate the social service systems to ensure your son/daughter has the services to which they are entitled.

4. Get on the Section 8 list

As soon as your son or daughter is 18, you can begin watching for open Section 8 lists. A Section 8 Housing Choice Voucher is a valuable housing subsidy that comes from Housing and Urban Development (HUD) and is administered by local housing authorities. It allows the recipient to pay approximately 30% of their income toward rent and utilities, and the housing authority pays the rest (up to a limit set by HUD). Most waitlists open only periodically, and the list can be 5-10 years long. So, you want to watch for opportunities to apply. With a Section 8 voucher, a person with disabilities can request reasonable accommodation for a live-in caregiver, and if approved, the housing authority will also pay the rent for the caregiver. If you imagine your son or daughter needing a live-in caregiver, this becomes a valuable addition to the compensation package you can offer a caregiver. Typically, you cannot rent from a relative with Section 8, but a person with disabilities can request reasonable accommodation to rent from a relative. Many families we’ve worked with have purchased a home and then rented to their son or daughter who has Section 8. If you think you may want to purchase a home for your son or daughter with disabilities, there are also special loan programs to help you accomplish this goal. Whether you purchase or not, Section 8 is a valuable subsidy to make rent and utilities more affordable. We have Section 8 experts on staff that can help you with the paperwork and processes once your son/daughter’s name comes on a Section 8 list.

5. Think about choices for living

Where do you envision your son or daughter living? Most families want their son or daughter to live near them or near family. Do you imagine them in a single-family home or an apartment? Shared living requires the support of families so living near is important. Transportation is also important. Does your son or daughter take public transportation? If they don’t, is this something they could learn to do? Many public transportation systems offer bus training. This is a good skill to learn while living at home. If your child needs special transportation, you’ll want to be sure that the housing you choose is within the footprint of the specialized transportation system. What other amenities would your child enjoy? Is there a Starbucks nearby? Restaurants? Grocery stores? Gym? Movie theaters? Parks? Church or Synagogue? What activities do they participate in? Are they working or volunteering? Our Residential assessment will offer you questions to ponder and help you clarify your vision of housing.

6. What happens when I’m gone?

And the question we hear more than any other… What happens when I can no longer support my loved one in shared living? This needs to part of your plan. Who is going to step in when you are no longer able? Is there a sibling, family member, or friend who will step in? Do you need to explore professional guardianship services? One of the benefits of shared living is that whoever you choose, they will not be alone. Your other parent partners will be there to help. And, the structures will be in place, designed, and set up by you. Shared living is a family-driven housing solution designed by the people who know best.

7. Start early, reap the rewards

I know that this all seems daunting, but Partners4Housing is here to help. My advice is to start early. Like a garden, you need to first plant the seed. It takes time for the seed to sprout and grow strong roots. It needs to be tended and watered. Then it will bloom. You will be amazed at the growth of your loved one when they move out into the place you have created for them. Enjoy the journey.