- At a glance:
Living skills are the key to success in independent living
Recent research indicates that, for those with autism, daily living skills is a greater predictor of employment and life satisfaction in middle age than autism severity, language, or I.Q.: https://insar.confex.com/imfar/2015/webprogram/Paper20033.html
Once you have applied for housing, you have an indeterminate time period of anywhere from 3-12 years. This is not idle time. This is the time to build critical living skills.
Only about 40% of adults with autism will meet criteria for either Personal Care Attendant services, Adult Foster Care, Shared Living, or a group home. The balance will need to rely on their own skill set; free services provided by friends, families, and neighbors; and services paid for out of pocket.
A good place to start is with the results from the Modified Adolescent Autonomy Checklist. Select a few concrete goals you would like to address.
Explore this idea further by reading “Living Skills: The Horse that Pulls the Housing Cart.”
Your family member may not be able to master some skills. For those skills, the goal is to build systems and practice those.
Get living skills into the IEP if your family member is still in school
The definition of transition services in IDEA specifically mentions independent
living and acquisition of daily living skills.
Start with the results from the Modified Adolescent Autonomy Checklist and select a few
concrete goals you would like to address.
Consider working with a life coach
If your family member has aged out of school or graduated, working with
a life coach might be an option. Life coaching is expensive but may be
covered by DDS if you have funding. Options include:
- LifeMAP through the Asperger Autism Network (AANE)
- Skills for Life (in a 40 mile radius around Brookline or Providence). This may be covered by some insurance.
- Autism coaching through the Northeast Arc
- Bridging Independent Living Together (BILT): (not currently covered by DDS)
- Doing a keyword search at Disability Info
Again, start with the results from the Modified Adolescent Autonomy Checklist and select a few concrete goals you would like to address.
Consider the Centers for Independent Living
There are 15 Centers for Independent Living in Massachusetts. They offer peer mentoring and skills training. Over 50% of their board members are people with disabilities.
Here are links to Mass. CILs and to organizations with similar programs:
- Mass Independent Living Centers (statewide)
- Easter Seals of Massachusetts (greater Boston)
- LUK (Central Massachusetts)
Again, start with the results from the Modified Adolescent Autonomy Checklist and select a few concrete goals you would like to address.
Get family and friends involved
Don’t forget to include siblings, extended family, and family friends. Some individuals may be resistant to working with mom or dad, but open to working with others. Travel training may sound dull but going to Game Stop on the bus with a sibling might be an adventure. Similarly, learning to cook with Mom may sound like a chore, but working with adult family friends to prepare and host a series of dinner parties at different houses is a whole different matter.
Again, start with the results from the Modified Adolescent Autonomy Checklist and select a few concrete goals you would like to address.
Consider technology
Increasingly, off-the-shelf technology can provide cueing and reminders through day-to-day activities. This is often at a lower cost than paying someone to come in and work with a person. There is also a severe workforce shortage and it can be very hard to find someone to come in for just an hour or two per day. Technology may make it possible to hire someone to cue your family member through tasks remotely who would not be willing to travel to work for such a brief period.
Technology is particularly helpful for skills a person may not have completely mastered, but needs some help with.
To learn more about technology, check out our technology page.
Transitional living programs
Some people benefit from intensive campus-based transitional living programs. Some of these are simply teaching living skills, while others teach those skills to individuals also taking college courses. The costs of these programs, which can vary from 18 months to four years, can be on par with a top tier private university. The major hazard is that skills can get rusty after completing a program while waiting for a housing voucher. Some examples of these programs in Massachusetts are:
- Berkshire Hills Music Academy in South Hadley
- College Internship Program in Lee
- Threshold at Lesley University
Programs in other states include:
- Chapel Haven in Connecticut
- First Place in Arizona (it is noted in the interest of transparency that AHP president Catherine Boyle is on the First Place advisory board)
- Mansfield Hall in Vermont
- SUCCEED in Vermont
None of these listings is intended to constitute a recommendation or endorsement by Autism Housing Pathways. A complete legal disclaimer is here.
Tenancy requirements and skills
Having a housing voucher is not enough to secure success in independent living.
For example, landlords will want to see a decent credit score. It’s illegal to refuse to rent someone because they are using a voucher, but it’s not illegal to refuse to rent to someone with either a poor credit score or none at all. And co-signers cannot be used with a voucher. Using a secured credit card can help build a score.
Similarly, landlords may require a rental history. Consider charging your family member a nominal rent and issuing a lease.
“A Place of My Own” is a free online course that combines elements of the HUD rental housing counseling course with an added emphasis on reasonable accommodations and modifications.
Health care skills
Is your family member ready to handle their medical care as adult? Can they take their meds, make an appointment, explain symptoms, get prescriptions refilled? Got Transition is a great site that helps with medical transition.
Part of handling transition is keeping track of crucial paperwork. Be sure to check out “My ‘Must Have’ Papers”, put together by UMass Medical School.
Building systems
Systems are the ways you get things done if the person can’t do
them independently, or at all. These need to be created and practiced while you are waiting for housing. They can include natural supports (you don’t pay for them) or paid supports
(whether paid privately or through DDS, MassHealth,
Don’t forget technology to cue the person through skills, or using technology
to provide remote support, such as through FaceTime.
Systems aren’t just for living skills. Who is going to make sure paperwork is
filled out or new support providers are hired? Some ways to address this include
- Circles of support (natural supports)
- PLAN (pooled special needs trust with case managers who can “identify unmet needs and eligible expenses; identify and suggest resources, goods and services”)
- Forever Parent (coordinates services)
Being listed in this section is not intended to constitute a recommendation or endorsement by Autism Housing Pathways. A complete legal disclaimer is here.
Tools for success
Autism Housing Pathways has tools you may find helpful for skill development:
- Visual Supports: Visual supports for self-care and household activities. These supports include both step-by-step written directions and picture directions.
- Hygiene and cleaning schedule, and how-to guide: This is a basic checklist individuals can use to maintain basic hygiene, and a clean kitchen and bath. It includes a list of basic supplies. It may be useful to individuals, families, and property managers.
- How do I?: A list of useful links, showing techniques for performing basic living skills. Some are descriptions with pictures, others are videos.
- Life Skills Library: A playlist on the AHPhousing YouTube channel that provides video direction for performing basic living skills.
- A Place of My Own: An online course that provides the background individuals need to find a place to live, live as independently as possible, maintain their home, and understand their rights and responsibilities as a tenant.