By Desiree Kameka, Autism Housing Network
This article was previously written for the Special Needs Alliance, posted here, and has been reposted on the Autism Housing Network.
As the project leader for the Autism Housing Network, I have visited over 100 residential options and social enterprises across our country. I have seen the great, the good, the bad, and the “I thought this was a good idea.” Abraham Maslow was right when he listed “shelter” as one of the foundational elements for his Hierarchy of Human Needs and Dimensions, along with air, water, food, sleep (another big one!) and clothing. A home determines physical and mental health, access to opportunities and quality of life for an individual. Housing is the anchor for a stable life.
When thinking about the future of your loved one with intellectual/developmental disabilities, you probably ask yourself if you should be focusing on finding the right service provider, building relationships, seeking employment, etc. We can invest enormous amounts of energy in pursuit of those important goals. But all that may be lost if rising rents force someone on an extremely low, fixed income, or their host family, to relocate. Or if the group home they live in must close. The greatest investment we make to ensure life stability is a home. Even when all other plans fail, loved ones still have their home.
To help families plan and understand their choices, Madison House Autism Foundation created a five-part video series called the AHN Virtual Tour of Housing and Support Options, which describes the benefits and considerations of 18 different housing and service delivery options, from traditional to emerging models. The video series will explain examples in depth, but there are four major categories to consider for legal and financial planning:
- Rely 100 percent on government support. Options include:
- An Intermediate Care Facility (ICF-ID), through which housing and support services are provided to eligible persons needing an institutional level of support;
- Placing in a host family home, adult foster care or group home, with rent paid to the service provider using Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), and support services paid for through a Medicaid waiver;
- Securing an affordable housing voucher/unit, with a Medicaid waiver paying for support services in one’s home.
The availability of these options is extremely limited and can fluctuate, depending on government policy and budgets. This is where members of the Special Needs Alliance can be of great help, since public assistance is often “means-tested,” and it is important to be vigilant to ensure that one remains eligible. The AHN Resource Directory has a filter for ‘Finding Public Assistance’ that can lead you to helpful links.
- Invest privately in housing and access Medicaid for support services and/or arrange supportive housemates. This disconnects one’s service provider from their housing and provides the most control over one’s home. One could continue living in their family home, or could move into a tiny home/accessory dwelling on the same property, or another home purchased for them elsewhere. Some families combine resources in order to buy a home together. Others may purchase a home/unit in an intentionally neurodiverse cohousing or planned community. A Medicaid waiver would then be needed to pay for everyday assistance and support. Under these circumstances, one can change service providers as needed without being forced to relocate. This separation of housing and service provider is generally referred to as “consumer-controlled” housing. Renting to roommates can offer an additional income stream to help pay for living expenses, as well as offering unpaid support.
- 100% private pay, tuition-based residential. This can be a single apartment in a big city or a campus-based setting, where one has home, work and recreational options. Tuition includes one’s housing, coordination of daily in-person support, meals, planned activities, transportation and other services. This is an option only if you can afford tuition that starts at $38,000 a year for the individual’s lifespan. It is important to think about whether or not the provider will be around for the duration of your loved one’s life or what would happen if their support needs change. You can find a list of these in the AHN Housing Directory by clicking “Private Pay” under the “Payment Options” filter.
- Transitional or post-secondary programs. This is not a permanent solution. Instead, it’s a private pay program that intensely teaches life skills, with the goal of giving someone the training needed to live more independently in the future. It is an investment of at least $2,500 a month for the duration of the program. These can also be found in the AHN Housing Directory.
I encourage families to explore options, and instead of trying to find the box to squeeze into, think of how supports can be based around the person. This will help determine the type of setting to call home and the people or places needed to maintain a happy lifestyle. This is called “person-centered planning” and, when at all possible, your loved one should be included in these discussions.
I hope this has been a helpful introduction and has persuaded you to prioritize housing when planning for the future.
My wife and I have a son (Mark) aged 42 , he lives in a local apartment with Pervasive Developmental Disorder, part of the autism spectrum. He is high functioning, drives and has passed the high school graduation test in our state. We are looking for a long-term place for him to stay when we are no longer able to care for him. I am 68 and my wife is 72 years old. I’m a retired Army Lieutenant Colonel and was a retired defense contractor for 25 more years. Mark especially needs someone to look after him to ensure he is eating properly (not just junk food and not eating spoiled food), his bills are being paid, and is not taken advantage of. Mark is sweet, never smoked, never drank alcohol or took illegal drugs. He likes to be by himself and goes to weekly mental health sessions (x3). Mark would like an individual apartment with some support. As he ages, also for someone to assist him into an appropriate assisted living or other facility based on his needs. We would plan to reside near him. We also will establish a special needs trust to support him, Our need in not immediate, but we hopefully have several years. Do you have any possible suggestions for possible places for our son, Mark, to reside? My wife and I could potentially volunteer there as well.
677A Dyer Circle
Huntsville, AL 35808
(256) 479-3383 (cell)
1) It’s important to explore what type of housing and support arrangements may fit your loved one best. I suggest watching our Virtual Tour of Housing options video series to get an idea of options: http://www.autismhousingnetwork.org/education/virtual-tour-housing-options/
2) Here are our suggestions on how to use the resources on the Autism Housing Network to start moving forward with a plan. There are financial assistance and support systems, but they are disconnected so the key is understanding them and seeing if your loved one would qualify. DO NOT count your income or any help you give her financially when questions ask about “income”: http://www.autismhousingnetwork.org/education/explore-housing-options/
3) Take a look at our online housing directory. http://www.autismhousingnetwork.org/housing/ It is continually updated as more projects come up.
4) We do offer direct consultations for a $100 fee which helps us continue to run our free programming. I would try to understand your family needs and preferences which would lead to a list of steps, links to options and resources specifically for your situation. Simply fill out this form if you would like to schedule a consultation: http://www.autismhousingnetwork.org/schedule-30-minute-consultation/
Hope this is a good start!
I was given you info by Lisa Parles. My husband and I have started to explore developing a community in central NJ that will be a supportive, loving environment for individuals with I/DD and their families.
Would you be able to schedule a time to speak with me to discuss further?
Hi Desiree, we met at an Els Foundation parent workshop and also at First Place Phoenix a few years ago. Since then I’ve been inspired to get to work. I am ready to find other families in Palm Beach County Florida to co create my vision ~ A Place to Call Home Palm Beach County Florida.
I recently created a Facebook page https://www.facebook.com/groups/aptchpbc
My overarching interest is to “level the playing field” for young adults with intellectual or developmental differences 21 years and older not a danger to themselves or others with a pathway to independent living in their first apartment in Palm Beach County. Land is expensive here….I’ve met with 2 CRAs, ~ Boynton Beach and Delray. Boynton Beach was more welcoming and liked the concept, said we have legs and feet; Delray has no RFPs planned now or in the future.
I look forward to learning and bringing value towards a new model for neuro diverse adults with inclusive affordable housing in Palm Beach County and welcome your suggestions and methodologies that worked in your state. ~ Thank you. Sherry
I’d be interested in knowing about San Diego resources., especially housing resources.