In 2022, we renewed our tradition of honoring Autism Month with daily housing Tweets. Here are the collected Tweets.
- It’s Autism Month: let’s talk about housing. Over 80% of ASD adults won’t receive housing from the Mass. Dept. of Developmental Services at 22. You’re going to need a plan.
- It often takes 5-10 years to implement a housing strategy, and you may need 5 more years of tweaking to get the kinks out. The question isn’t how old your family member is, but: How old are you?
- Steps to take before age 18 (1): save money! Nothing in the name of the person with a disability – make sure family knows! Consider an ABLE account or a special needs trust. Did you know a housing voucher won’t cover the security deposit?
- Steps to take before 18 (2): Work on daily living skills. Research shows living skills are the single most important contributor to success (defined as contentment + employment) in midlife. Living skills can also be critical to maintaining tenancy.
- Steps to take before 18 (3): Don’t try to go it alone. Get help with teaching living skills. Get it in the IEP, get other family to help, reach out to the Centers for Independent Living.
- Living forever isn’t a plan. No one is going to do for your kid what you do; that’s why skill building is critical. Don’t lay out clothes and pour cereal if they can do it themself. It’s OK if they have 5 of the same shirt and eat the same breakfast every morning.
- Your kid is 18. Now what? Check out our Turning 18 checklist.
- 18 is when things get serious. Get on the Roadmap to Housing, a 5-10 year strategy with five road markers.
- Roadmap 1: Assess skills & supports – Identify skills your family member has or can acquire, as well as those they will need help with or will need to have done for them. (Start as early as possible.)
- Roadmap 2: Get on lists. Get on appropriate housing waiting lists (ideally between ages 18-22).
- Roadmap 3: Apply for benefits. Apply for supportive services and cash benefits that can be used now (ideally between ages 18-22).
- Roadmap 4: Build skills. Develop daily living skills and USE them. Develop and implement systems to handle skills your family member will need help with or to have done for them. (Do this while waiting for housing.)
- Roadmap 5: Move in. Execute your housing plan: move in, generalize skills and support systems to the new setting, add any additional services appropriate to the new setting.
- Living skills fall into one of four buckets: 1) those you have and regularly do; 2) those you can learn or don’t yet regularly do; 3) those you will always need some help with; and 4) those that will always need to be done for you.
- While waiting for housing: work on moving skills from bucket 2 (skills you can learn) to bucket 1 (those you use), and develop systems and strategies for buckets 3 & 4 (those you will always need help with or to have done for you).
- While waiting for housing, actively PRACTICE the systems and strategies to handle buckets 3 (skills you will always need help with) & 4 (skills you will always need done for you). The goal is to just generalize them to a new location when you move in.
- Identify skills using the Adolescent Autonomy Checklist, developed by the Youth in Transition Project (1984-1987) University of Washington Division of Adolescent Medicine. We’ve modified the column headings to reflect our 4 bucket model. https://autismhousingpathways.org/wp-content/uploads/2022/02/02-Modified-Adolescent-Autonomy-Checklist.pdf
- Be aware of the regulations governing the settings where MA Dept. of Developmental Services (DDS) dollars can be used. https://autismhousingpathways.org/the-current-housing-situation/#DDS
- There are 7 housing models in Massachusetts where it is clearly permissible to use DDS support dollars. Our housing infographic summarizes these and the funding streams that can be used in them. This doesn’t mean all costs will be covered.
- Model 1: the family home. More economical than just about any situation when a voucher is unavailable, but not sustainable unless someone steps in when parents can’t provide care. It also does not provide any separation for the individual. (Red person is staff.)
- Model 2: Family as landlord. The person lives in an apt. attached to the family home and a personal care attendant comes in. The cost is about the same as the previous model, assuming: a Sec. 8 voucher for a studio, PCA funding, + some DDS supports and respite.
- Model 3: Family as landlord w/live-in support. Apt. attached to family home, w/ Shared Living or AFC provider. Person could live in the main house w/a provider & housemates, w/Mom & Dad downsized to the apt. DDS supports can be used for skill-building & outings.
- Because of US Dept. of Labor regulations around caregivers, this model is most affordable if the parents downsize to the apartment, allowing the caregiver to receive stipends for multiple individuals.
- Because of US Dept. of Labor regulations around caregivers, this model is most affordable if the parents downsize to the apartment, allowing the caregiver to receive stipends for multiple individuals.
- Model 4: Live-in support. The person lives in a condo or home owned by the family, or in an apartment w/a housing voucher, w/either a Shared Living Provider or AFC provider. 1-2 housemates ↑ affordability. DDS supports can be used for skill-building and outings.
- Model 5: Licensed group home. Must have an intellectual disability & not be able to live safely in another setting. Only about 100 people/year in Mass. receive placement in a group home at 22. Not an option for most w/ASD.
- Model 6: Subsidized supported housing. An apartment in site-based affordable housing (e.g., senior housing or a tax credit bldg) served by Group Adult Foster Care. GAFC pays for 1-2 hours of drop-in services. DDS supports can be used for skill-building & outings.
- Model 7: Community. An apt w/some life coaching & remote supports (e.g., FaceTime for 14 hours/week). The Local Housing Authority may stretch to cover rental costs up to the HUD Fair Market Rent + 10%. DDS might cover the full coaching and remote supports costs.
- Don’t forget to look into reduced cost phone, internet, and electricity for people on benefits.
- Don’t forget to look into reduced cost phone, internet, and electricity for people on benefits.
- The 2016 MA Housing Think Tank brought together stakeholders to do an educated deep dive to identify additional housing models that could be implemented in MA. It produced a white paper.
- For the 2016 think tank, a list of consensus housing principles was crowdsourced & videos of housing models were solicited via Facebook. Videos organizers deemed consistent w/the consensus principles were used to generate 12 housing models.
- Think tank participants analyzed housing models to determine those best able to meet the needs of a range of 12 hypothetical people w/ASD. Models selected, others considered, and models ID’d since the think tank are at: https://autismhousingpathways.org/housing-models/
- Thanks for reading our Autism Month Tweets. Key takeaways: most people need a voucher; long wait lists; start now; work on skills. Learn more: https://autismhousingpathways.org/ and https://18section8.org/