Paying for the help you or your loved one may need in the home or out in the community can either be done privately out-of-pocket, using earned income from a job, or through Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), but most adults with A/I/DD will need a Home & Community-Based Services waiver. Every state offers different waiver options.  Each of the waivers offered by your state may have different service delivery options.

In order to access a waiver, you will need to contact your states Developmental Disability Agency and apply. Unfortunately, waiting lists are common in states and you may not be able to access services you need to move out of your family home immediately, therefore its imperative you apply for a waiver as soon as possible. Not everyone with an A/I/DD will be found eligible, therefore it is important to describe your support needs in detail on what may be a difficult day- this is not the time to brag about life skills.

Some properties offer supportive amenities that may or may not be included in rent or housing costs. These supportive amenities may be critical for adults with A/I/DD who are not eligible for a waiver as they typically offer the support needed to help residents stay housed, connected to resources, and their communities.

This video on Public Funding 101 can be quite helpful to explore other outlets of financial support.

Paying for housing can either be done using earned income from a job, help from family or a Special Needs Trust, through Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). It is important to note that a Home & Community-Based Services waiver can never be used to pay for housing, even if you live in a provider-controlled setting like a group home or host home.

Housing can be expensive, but adults with A/I/DD are often low income and may qualify for a rental subsidy (generally called a housing voucher) through a local Public Housing Authority or may be able to access a subsidized unit. Unfortunately, these units and housing vouchers are in high demand and waiting lists are common or may not even be available.

Some individuals or their family may be able to afford a homeownership option such as an Accessory Dwelling Unit, purchasing another home, or bequeathing the family home. Some states may offer tools to help with the purchase of a home through the state Housing and Finance Authority. Your local Public Housing Authority may even offer the Housing Choice Voucher Homeownership option.

There are important considerations to make when renting or investing in housing when you also rely on means-tested programs. This Planning Across the Spectrum video series may be helpful in answering additional financial questions.

This video on Public Funding 101 can offer additional outlets of financial support for other living expenses.

There are different ways people can get the help they need in their home or in the community, this is called Long-Term Support Services (LTSS). This video shares the benefits and considerations of various LTSS options.

If you are using a Medicaid-funded waiver, there may be limitations on your options that Medicaid will fund due to your specific state offerings. You can always connect with others and advocate for increased options at the state level. This website will help you find the Developmental Disability Agency that manages the waivers for your state.

Other videos can be found in our Housing & Support video series that address different questions around support services and housing to help people explore and think about what may be best for you or your loved one.

Unfortunately, there is not enough funding for housing and services to meet the demand, thus not every listing has current availability. A unique feature located within the AHN Housing Directory is a category addressing availability. Often times you will be able to discover if the particular property you are interested in is currently available. You can also reach out directly to the organization or property to find out more information and request if they have a waiting list.

The AHN is not a comprehensive resource for local help, but offers the Public Funding 101 video as well as the following resources to direct you to broad local support. The following may be additional beneficial local community resources:

If you continue to be denied help or there is not assistance to meet your needs, your elected officials should know! They often want to know the barriers their constituents face, and likely have no idea that you and others with A/I/DD are experiencing these challenges. Don’t be shy- write or call their office to share not only the challenge, but even what could make the system of support more accessible for you or a loved one.

This is a common question! To offer some guidance, the AHN team put together a Find 101 page that offers the first few steps to think about when searching for what type of housing and services may be right for you or your loved one.

 

Although our country does not have any dedicated funding streams to help develop housing targeting adults with A/I/DD, there are tools that housing developers use to create opportunities. Your first decision is whether or not you want to use federal or state subsidies, or whether you will develop without government subsidies.

Government subsides: In order to access these subsidies, it will be important to partner with an experienced affordable housing developer who has a good track record as it is a very competitive process in most areas. Additionally, when using government subsidies, there are regulations that must be considered that may limit some freedoms including tenant selection, number of units, and in the case of Section 811, limitations on number of units that can be dedicated to adults with A/I/DD. Low income housing tax credits, project-based vouchers, and housing trust funds are some of the common tools used. The National Low Income Housing Coalition offers a comprehensive Advocates Guide that explains many of these programs and more.

Non-governmental options: You can create or partner with a non-profit and give people the chance to support your life-changing vision through a donation. Additionally, you could seek support of the local or national philanthropic community by applying for grants. Some local libraries or non-profit associations may share access to grant databases. Alternatively, you can create an LLC or other business entity and seek “angel investors” who can lend money towards your goal for a small return on investment- this can come from future property households, such as the case in cohousing communities, or from those who want to support the project, but seek to be paid back in the near future.

Want more specific feedback for your vision? You can also schedule a consultation with Desiree Kameka Galloway, Director of the Autism Housing Network here.

The A Place in the World report offers helpful language for community and housing development purposes.

In terms of how to talk about adults with A/I/DD, as a general rule, language about individuals with disabilities should reflect that which is used by self-advocates to describe themselves. Occasionally, self-advocates don’t agree on which words are best. For example, some people on the autism spectrum use identity-first language (“I am autistic”), and other people use person-first language (“I am a person with autism.”) Judy Endow, a well-known self-advocate on the autism spectrum, discusses some of the reasons in this article while highlighting what is most important:

“Rather than seeing the polarized language of person with autism and autistic, I see a unifying construct. I now see that when Kathie Snow invited us to use person-first language she was actually inviting us to come into a person-first attitude. And it is this person-first attitude that unites the word usages of person with autism and autistic. We all want to be included in the human race.” – Judy Endow

This blogpost offers a helpful chart for the Do’s and Don’ts of Talking About Disability

The Autism Housing Network offers information and resources targeting autistic adults as well as other adults with intellectual/developmental disabilities (A/I/DD). Some housing options in the AHN Housing Directory may also seek to serve adults with Traumatic Brain Injury.

It is important to recognize that the AHN also includes and encourages neuro-inclusive community development as people live both inside their home and in the greater community as well.