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2022 Autism Month Housing Tweets

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In 2022, we renewed our tradition of honoring Autism Month with daily housing Tweets. Here are the collected Tweets.

  1. 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.
  2. 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?
  3. 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?
  4. 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.
  5. 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.
  6. 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.
  7. Your kid is 18. Now what? Check out our Turning 18 checklist.
  8. 18 is when things get serious. Get on the Roadmap to Housing, a 5-10 year strategy with five road markers.
  9. 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.)
  10. Roadmap 2: Get on lists. Get on appropriate housing waiting lists (ideally between ages 18-22).
  11. Roadmap 3: Apply for benefits. Apply for supportive services and cash benefits that can be used now (ideally between ages 18-22).
  12. 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.)
  13. 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.
  14. 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.
  15. 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).
  16. 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.
  17. 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
  18. 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
  19. 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.
  20. 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.)
  21. 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.
  22. 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.
    1. 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.
  23. 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.
  24. 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.
  25. 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.
  26. 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.
    1. Don’t forget to look into reduced cost phone, internet, and electricity for people on benefits.
  27. 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.
  28. 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.
  29. 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/
  30. 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/

Developing a housing strategy using AFC (our 2017 Autism Month housing Tweets – updated 2022)

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In honor of Autism Month, Autism Housing Pathways described ways to develop a housing strategy based on MassHealth’s Adult Family Care/Adult Foster Care program. The outline was issued as a series of daily Tweets in April. Here they are, in a single post. Bear in mind, this strategy is specific to Massachusetts.

  1. It’s Autism Month. Let’s look at developing a housing plan, one Tweet at a time.
  2. The Adult Family Care (AFC) program can pay you to provide support to your adult child who lives with you.
  3. AFC is a program of MassHealth. MassHealth is Medicaid. Changes to Medicaid could endanger AFC.
  4. To qualify for AFC, your child must need prompting with 1 or more activities of daily living. You can’t be the guardian.
  5. Consider saving the AFC stipend (not in your child’s name). It’s yours, and it’s tax free.
  6. Get your child on the Section 8 waiting list at 18 (or NOW, if they’re over 18). Go to www.18section8.org to learn how.
  7. It may be a 10 year wait to get a Section 8 voucher. Work on living skills while you wait. Skills for Living
  8. Are you saving the AFC stipend? If your family member waits 10 years for Sec. 8, that’s a $90K nest egg.
  9. Section 8 is a part of HUD. In 2017, a 13% cut in the HUD budget was proposed. In 2022, due to COVID, more people are on waiting lists. The wait for a voucher could get longer.
  10. Your child is at the top of the Sec. 8 list! What’s your plan? You may only have 60 days (120 w/extension) to use the voucher.
  11. One option: your child could rent a two bedroom apt. w/ Sec. 8. An Adult Foster Care provider could move in, too.
  12. You could add a 2 bedroom accessory unit to your house for your child and an Adult Foster Care provider.
  13. How to pay to add on the accessory unit? You saved the Adult Family Care stipend, right? It’s a start.
  14. You could supplement what you saved from AFC with up to $50K from the Home Modification Loan Program. https://bit.ly/2lrSpJX
  15. Need some more? Consider a home equity loan. Assume construction costs of at least $300/sq. ft.
  16. Make sure local zoning permits accessory units (possibly via a special permit). Otherwise, you may need to move first.
  17. H. 1370 would allow accessory units for a disabled family member as of right on lots of 5,000+ sq. ft. https://malegislature.gov/Bills/192/H1370
  18. Or you could buy a condo for your child with space for an Adult Foster Care provider, using the AFC savings for a down payment.
  19. Need a mortgage? Fannie Mae lets you get a 5% down mortgage to buy a home for a disabled adult child. Fannie Mae Occupancy Types
  20. Your child uses Sec. 8 to pay you rent; you use the rent to pay the mortgage.
  21. Can’t carry (or qualify) for two mortgages? One option is to sell your house and buy a duplex.
  22. Or you could consider buying a three-family, and using the rent from the third unit for respite, maintenance, etc.
  23. Or you could buy that three family with another family; the kids live together with an Adult Foster Care provider.
  24. Whatever you do, try to get individual support hours from DDS to help your child work on skills and get into the community.
  25. Look into assistive technology to help increase your child’s independence. Assistive Technology
  26. If eligible, apply for one of DDS’s waivers for adults with intellectual disabilities, to help secure ongoing access to supports.
  27. For those on a DDS waiver, ½ of costs are paid by Medicaid. Does your child go to Day Hab? That’s Medicaid, too.
  28. If Congress ever block grants Medicaid, that could end the entitlement to AFC, PCA, and Day Hab.
  29. The Devil is in the details. Come to our 5-part Zoom, “Learning about housing“.
  30. Consider individualized housing counseling.

Housing, in a month’s worth of Tweets

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In April of 2016, Autism Housing Pathways posted a series of Tweet length “Autism Month Housing Thoughts of the Day”. They comprised a mini-tutorial on housing for individuals with autism and other developmental disabilities, including housing subsidies and supportive services. They are updated (as of 2022) and republished here, with three additional comments to add information on Medicaid waivers. Acronyms are spelled out here, as they were not in the original Tweets. To learn more about many of the services mentioned, check out our Turning 18 checklist. Translations of “Housing in a Month’s Worth of Tweets” are available on our Translations page.

  1. Of those with family involvement, only about 12% will be both eligible and prioritized for Community Based Residential Services through the Department of Developmental Services (DDS) at age 22.
  2. It frequently takes 5-10 years to plan and implement a housing strategy; start at 18 if the goal is independent living by 30.
  3. The housing equation is: bricks & mortar + food + services = housing. There are subsidies for all, but not all can be combined.
  4. Supplemental Security Income (SSI)* can be used for any part of the housing equation. People can apply based on their own income at 18.
  5. SSI has asset and income caps; other income can reduce benefits. Try to avoid assets in the person’s own name.
  6. SSI makes someone automatically eligible for MassHealth (Medicaid). Medicaid is the main way to pay for services.
  7. Social Security Disability Insurance (SSDI)* can be used for any part of the housing equation. Assets and unearned income do not affect benefits.
  8. SSDI makes you eligible for Medicare (not Medicaid) after 2 years. Medicare can’t be used for long-term services.
  9. For those disabled before 22, SSDI can be based on their own income or a parent’s, once the parent retires.
  10. Try not to retire until your child receives SSI as an adult. Otherwise, they may not qualify for MassHealth.
  11. Those who don’t qualify for MassHealth can qualify for CommonHealth if they work 40 hours/month.
  12. People can also qualify for CommonHealth by meeting a one-time spend-down.
  13. The most important housing subsidy is Section 8. Apply at age 18. Go to www.18section8.org to learn how.
  14. The wait for a Sec. 8 voucher can be up to 12 years. Apply at 18.
  15. A family member can be the Sec. 8 landlord for a person with a disability. But they can’t live in the same unit.
  16. Someone who needs a live-in aide can get a 2-bedroom Sec. 8 voucher. But the aide can’t be immediate family.
  17. Food stamps and Sec. 8 will not result in a reduction of SSI benefits. People usually qualify for food stamps at age 22.
  18. The food stamp recipient needs to buy and prepare food “substantially separately” from the rest of the household.
  19. MassHealth State Plan Services are the main way to pay for long-term services and supports.[Addendum: other than Medicaid waivers — waivers are addressed below.]
  20. MassHealth State Plan Services are entitlements. There are no waiting lists if you qualify.
  21. Adult Foster/Family Care (AFC), Personal Care Attendant (PCA), and Group AFC (GAFC) are state plan services.
  22. You can’t combine AFC, PCA, and GAFC. Pick one.
  23. AFC pays a stipend to a caregiver who lives with the person. A parent who is not a guardian can be a caregiver.
  24. Consider saving the AFC stipend while waiting for a Sec. 8 voucher. It goes a long way toward a down-payment.
  25. AFC generally can’t be combined with food stamps.
  26. GAFC can only be used in assisted living or subsidized housing – not with a mobile Sec. 8 voucher.
  27. DDS individual support hours can be used with AFC, PCA, or GAFC.
  28. DDS housing dollars can only be used in settings with 5 people or less under one roof.
  29. Families can borrow from the Home Modification Loan Fund to help create an accessory apartment. A bill in the state senate (S2132) would make creating accessory units a by-right zoning use.
  30. Housing + Living Skills = Independent Living: https://autismhousingpathways.org/independent-living-skills-the-horse-that-pulls-the-housing-cart/
  31. Bonus day: Our “Thinking about housing” webinar is archived at https://autismhousingpathways.org/thinking-about-housing-webinar-tuesday-march-17th/

Addendum — Medicaid waivers:

  1. Those receiving services from DDS can apply for a Medicaid waiver. The feds reimburse the state for half the cost of waiver services.
  2. Waiver services are portable, meaning the dollars are attached to the person on the waiver, and can move with the person.
  3. There are three kinds of waivers: Intensive Supports, Community Living, and Adult Supports. https://www.mass.gov/lists/dds-home-and-community-based-services-hcbs-waiver

* Emergency Aid to the Elderly, Disabled, and Children (EAEDC) is a cash benefit available to some Massachusetts residents who do not qualify for SSI or SSDI.

Translations of these Housing Tweets are available in Arabic, Chinese, Haitian-Creole, Portuguese, Spanish, and Vietnamese on our Translations page.

Want more bite-sized housing ideas? Check out our 2017 housing Tweets and our 2022 housing Tweets.

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