- At a glance
- Most families will have to find or create housing.
- There is a range of public funding streams that families can combine with their own resources to create housing.
- There are seven basic housing models that can currently be created with these funding streams in Massachusetts.
- Some private-pay housing models exist.
- The Department of Developmental Services (DDS) determines where and how its funds can be used. It relies heavily on its interpretation of the Centers for Medicare and Medicaid Services’ final rule on the definition of “Home and Community Based Services”. DDS policies limit the ability to use their funds in some private-pay housing models.
- Some organizations, lawyers, and financial planners have produced resources to help families plan.
Most families will have to find or create housing
The most important point to be aware of is that services for adults with autism are not an entitlement, unlike educational services for children.
Adults with developmental disabilities are eligible for services from the Massachusetts Department of Developmental Services (DDS) if they:
- Have an intellectual disability (defined as an IQ of 70 or below, although there is a five point margin of error if the person is found to have significant functional impairment)
- They have a diagnosis of Autism, Prader-Willi syndrome, or Smith-Magenis syndrome and substantial functional impairment in three or more areas of the seven areas of major life activities as determined by Adaptive Skill Testing administered by DDS.
Being eligible for services does not mean one will be funded for housing, however. In point of fact, DDS does not budget for housing for anyone without an intellectual disability. Even those with an intellectual disability are not prioritized for housing unless DDS feels they need 24/7 supports and are not healthy and safe in the family home — or if there is no family home. At age 22, only about 12%-15% of those with autism meet this criteria. The implication is that most families in Massachusetts will have to find or create housing.
To learn more about DDS eligibility and the prioritization process, please check out our presentation, “Thinking about housing“.
Public funding streams
Individuals and families trying to find or create housing need to combine their own resources with a range of government funding streams. All of these are governed by rules that dictate where and when they can be used, as well as whether (and how) they can be combined. The “Housing Equation” is a graphic that illustrates funding streams, and what they can be used for. A brief description of the rules governing the use of these resources can be found in a blog post on the Autism Housing Pathways’ website, “Housing, in a month’s worth of tweets“. A more extensive discussion is provided in our presentation, “Thinking about housing“.
Seven basic housing models
There is a range of supported housing models that can be produced using public funding streams. These can be characterized as:
- The family home: a non-custodial family member provides support, or support comes in periodically
- The family as landlord: the individual lives in an attached unit, with support than comes in periodically
- The family as landlord (with live-in support): the individual lives in an attached unit, with live-in support
- Live-in support: the individual lives in a separate unit, with live-in support. The unit may be owned or rented by the individual, the family, or the support provider.
- A group home: a number of people live in a small group residence, with support provided by hourly workers provided by the state or an agency. The home may be owned by families, the state, an agency, or a third party landlord.
- Assisted living or subsidized supported housing: individuals may live in an assisted living facility or subsidized housing, with support that comes in periodically.
- Community: an individual lives in an apartment or home in the community, with support that comes in periodically.
These arrangements, with the funding streams used to support each one, are summarized in an infographic, Mass. living arrangements for persons with developmental disabilities.
Private-pay housing models exist
Some private-pay models exist in Massachusetts. The out-of-pocket cost varies widely, depending upon both the agency and the setting, from about $1,000/month to $6,000/month. Examples are:
Jewish Family & Children’s Service (JF&CS). JF&CS’s Community Supported Living “offers daily living supports for adults with disabilities living in their own apartments. Located in Brookline and Allston/Brighton, each supported living program consists of a cluster of apartments within a single building or neighborhood, facilitating community among residents and frequent interaction with staff.”
Mainstay. Mainstay offers a “Collaborative Living Support program that combines family and staff support.” “Each resident has their own private room, with a shared bath and ample common space, including fully equipped kitchen and laundry.”
Specialized Housing, Inc. Specialized Housing uses a condominium model to create housing for individuals who can function somewhat independently and whose behaviors can be managed with the level of staffing agreed upon by the family. They have been in existence since 1983. They also provide services for individuals in rental apartments.
Step By Step Supportive Services (formerly Side by Side Supported Living) Step By Step will meet weekly with individuals in their home (including dormitories) to provide support. They also have a residential setting on Beacon Street in Brookline that provides studios and one-bedroom apartments.
TILL. TILL offers “Individualized Support Options” that can include apartments owned and/or managed by TILL
DDS determines where and how its funds can be used
DDS determines the settings in which their funds can be used. The policy is outlined here. The policy is explicitly grounded in what is called the Centers for Medicare and Medicaid Services (CMS) final rule on Home and Community Based Services (HCBS). This 2014 rule is an interpretation of the Supreme Court decision, Omstead v. LC. This 1999 decision said that, under the American’s with Disabilities Act, people had a right to live in the community, as opposed to an institution. The final rule is CMS’s statement of what constitutes community. While some states have permitted a broader range of settings than DDS, CMS has stated that the final rule is intended to be a floor, not a ceiling, and states are free to interpret it more strictly.
As a practical matter, this means that DDS funds cannot be used in some settings, including some of the private-pay models described above.
Additional resources exist
Some organizations, lawyers, and financial planners have produced resources to help families plan for adulthood, including housing. Examples include:
Coming of Age in Massachusetts: A Legal Resource Guide. Coming of Age in Massachusetts was written by special needs lawyer Frederick Misilo, Jr.
Important Transition Information Every Family Should Know. This is a compilation of transition fact sheets produced by DDS.
Keep Your Housing! A Guide to Help Massachusetts Tenants with Mental Health Issues Maintain Their Housing. From the Northeastern University School of Law and the Mental Health Legal Advisors Committee.
Mass Families Organizing for Change housing webinars. This is a set of 8 archived webinars recorded in 2020.
Mental Health Legal Advisors Committee fact sheets. The MHLAC has a set of useful fact sheets on DDS client rights.
Moving Out: A Family Guide to Residential Planning for Adults with Disabilities. Moving Out was written by Dafna Krouk-Gordon of TILL, a provider of innovative housing, and special needs lawyer Barbara Jackins. A new edition is due out soon.
Priced Out. This is the Technical Assistance Collaborative’s periodic analysis of the housing crisis for people with disabilities.
SNFP Housing Checklist. Developed by Special Needs Financial Planning, the checklist “contains a comprehensive list of factors to consider when transitioning young adults with disabilities from the family home to independent living”.
The Road Forward. This is a DDS guide to transition planning.
Unlocking the Door to Community Living. This publication of Jewish Family and Children’s Service is a comprehensive approach to transitioning to adulthood. Housing is treated as one subject among many, including support services and social networking.
Please remember that living skills are a critical part of any housing plan. Check out our page Skills for Living to get started.