- Demographics — what we know and don’t know
- At a glance: it’s likely there are 75,000-100,000 people with autism in Massachusetts
- At a glance:
- Probably 80%-90% of autistics are not working
- About 12% of people with autism will receive residential services from DDS at 22
- About 3%-6% can live independently without supports; better education in daily living skills might improve this figure
- As of now, about 80%-85% will need affordable, supported housing beyond that currently provided by DDS
- At a glance:
- Funding streams and models
- At a glance:
- The housing equation: funding streams and what they can be used for
- Housing, in a month’s worth of tweets
- Families have some financial ability to participate in public-private models
- Mass. living arrangements for persons with developmental disabilities
- At a glance:
- Barriers to wider adoption
- At a glance:
- Housing options are not well understood
- Affordability is a barrier to many families, but creating an accessory apartment loan program could help
- Department of Labor regulations governing minimum wage and overtime make it more expensive to create housing where the individual does not need to move when provider arrangements change
- Many lenders are unaware of, or choose not to tap into, Fannie Mae provisions that permit parents of people with disabilities to be treated as owner-occupiers
- Zoning does not permit accessory units in many jurisdictions
- Adult Family Care, Adult Foster Care, the Personal Care Attendant program, and Group Adult Foster Care all have limitations that make them inaccessible or inadequate for people who could benefit from them
- Insurance reimbursement may not be available for assistive technology that can increase independence and reduce staffing costs
- Without a housing voucher, housing is unaffordable for many; waiting lists for housing vouchers can be as long as 12 years, and many lists are frequently closed
- At a glance:
- Problems with existing housing stock
- At a glance:
- Congregate options do not permit an individual to choose their housemates
- The design of much existing housing is a poor fit for the needs of people with autism
- At a glance:
- Homelessness — the unknown factor
- At a glance:
- There is an autism screening tool that could be readily used in shelters
- There might be 200 homeless autistics with a comorbid psychiatric disorder in Massachusetts
- People with autism are likely to be disproportionately represented among those “sleeping rough”
- An autism briefing is available that can be used by frontline staff working with the homeless
- Sensory issues can lead individuals to avoid shelters
- At a glance:
Demographics — what we know and don’t know
As of 2016, we do not know how many people in Massachusetts are autistic. The Department of Public Health (DPH) does not currently collect data on the incidence of autism. Up until quite recently, the Department of Developmental Services (DDS) did not keep diagnostic-specific data, either on the number of people eligible for services or the number found ineligible. Nationally, the Centers for Disease Control (CDC) estimates that the incidence of autism is 1 in 68 children. If we were to assume a similar ratio holds in the Massachusetts population as a whole, we would get a number of just under 100,000 Massachusetts residents. We do know that the Massachusetts Department of Elementary and Secondary Education (DESE) lists 18,572 students ages 3-21 on an Individualized Education Plan (IEP) for autism in 2015-2016. This number represents a floor, as it does not include students with autism who require accommodations but not special education (those on a “504 plan”) or those not served by the department. If were to extrapolate this number to the population as a whole (by multiplying by 4), we would get a number just under 75,000. It would appear likely that the number of autistic residents in Massachusetts is between 75,000 and 100,000.
Demand — what we know and don’t know
Translating the above numbers into demand for housing is an inexact process, at best. However, there are some things we do know. According to the Bureau of Labor Statistics, only 18.5% of people with disabilities were employed in May of 2016. Employment among young people with autism is lower than that of other young people with disabilities, meaning that the percentage of autistic adults who are not working is most likely over 80%. We can safely assume that these individuals are not likely to afford housing on their own.
DDS is the lead agency serving individuals with autism in Massachusetts. In FY16, there were 855 young people with developmental disabilities found eligible for services from the department upon turning 22. 237 were identified as needing Community Based Residential Services, or some 28%. Currently, the department is budgeting for residential supports for only for people who also have an intellectual disability (ID). According to the CDC, 31% of individuals with autism have an ID, and another 23% are borderline. Assuming half of those with a borderline IQ are determined by DDS to count as having an intellectual disability, a rough calculation (28% of 42%) would show that about 12% of those with autism would receive Community Based Residential Services at 22.
A survey done by Autism Housing Pathways in 2011-2012 found that about only about 3% of those with autism were completely independent in both their Activities of Daily Living (ADL) and Instrumental ADLs (including items like handling finances, shopping, and taking medication). The rest presumably need some supportive services in their homes. These findings are roughly consistent with a 2008 study (cited on page 15 of a 2009 report) that found 4% of autistic adults living independently; another 2% lived with a spouse, partner, or a family member who was not a parent or guardian. (It is possible that better training of transition-age youth in daily living skills might improve these percentages. This is significant, as adaptive behavior is highly correlated with both employment and quality of life in middle adulthood.)
Taken together, as of now some 80%-85% of Massachusetts autistics are likely to need some form of affordable, supported housing beyond that currently provided by DDS.
Funding streams and models
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. An explanation of the acronyms used in the “Housing Equation” graphic can be found in the Quick Link, Acronyms. 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“. In terms of the family contribution to housing creation, AHP’s housing survey found that about 50% of families indicated they could sustainably contribute $500-$1,000 per month toward housing, some of whom could pay considerably more. Similarly, while about half could not afford even $5,000 toward a down payment, a significant number could afford more than $35,000, indicating there is potential for mixed market housing options, with some families acting as patient capital.
There is a range of supported housing models that can be produced using these 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.
More comprehensive explanations of funding streams and housing models are:
Thinking about housing: a webinar produced by Autism Housing Pathways on May 17th, 2016.
Housing options for adults with autism: slides from a 2015 webinar hosted by the Autism Insurance Resource Center (there are many similarities to the “Thinking about housing” webinar).
Barriers to wider adoption
There are a number of barriers to the wider adoption of existing models. Lack of awareness, affordability, financing, zoning, support program requirements, insurance reimbursement, voucher shortages are among them.
Lack of awareness: Many families are simply unaware of available resources. A survey done by Autism Housing Pathways found that over half of families whose family members appeared to be eligible for Adult Family Care either had never heard of it or thought their family member did not qualify. Teachers of transition age students are often unaware of housing options and therefore fail to provide information to students and their families. Additionally, those families frequently are unaware that they need to plan well in advance for housing, and therefore are averse to taking steps to prepare while students are still in school.
Affordability: For many families and individuals the ability to control the property means stability. In many program models, if the individual lives with a support provider, the individual needs to move when the support provider no longer wishes to give support. However, affording real estate or the cost of adding an accessory unit to the family home is cost prohibitive to many families. (S. 2202 would help address this by allowing families to get a loan from the state for the creation of an accessory apartment and would require no new state money; a summary of how families might benefit can be seen here).
Additionally, support provided in the home of a provider is not subject to Department of Labor (DOL) regulations regarding minimum wage and overtime. If a provider lives in a home owned or rented by the individual or a third party (such as family or a provider organization), it is subject to the DOL regulations. Even if the support provider receives free rent (or pays a nominal amount), which counts toward the reimbursement considered by the DOL, this can add over $600/month in cash compensation needed above the Adult Foster Care stipend.
A brief description of potential costs associated with different models can be found in this excerpt from AHP’s manual for participants in its daylong housing workshop.
Financing: Many lenders treat borrowers trying to buy property for an autistic family member as if they were buying an investment property. Programs designed for low-income borrowers are generally out of reach for individuals relying on SSI as their primary income, and their family members cannot tap into them, as they are not considered owner-occupiers. Fannie Mae will treat a parent buying a home for a disabled adult child as an owner occupier, but only one lender in the state is known to tap into this option.
Zoning: Accessory apartments have wide appeal for the reasons outlined here. However, many municipalities prohibit accessory units or require a special permit. The special permit process, even when available, can force families and individuals into a situation where they have to discuss the nature of an individual’s disability and support needs in a public forum. Neighbors are frequently far from welcoming. Rhode Island has made such units a by right use when created for a family member with a disability, considering them a reasonable accommodation for disability. However, there are difficulties with Rhode Island’s statute. It is important that two bedroom units be permitted so that a live-in support provider can reside in the same unit, in order to meet the requirements of Adult Foster Care. It is also important to allow a special needs trust to be considered an owner-occupier, so that the individual can continue to reside there once the parents are out of the picture.
Support program requirements: Adult Family Care does not permit the support provider to be a legal guardian, putting this program out of reach of single parents. Level II of Adult Family Care and Adult Foster Care requires an individual need physical assistance with three or more Activities of Daily Living (ADLs), or with two if a maladaptive behavior is present. Many individuals with autism have more than one maladaptive behavior present and require only cueing to perform ADLs. Despite having intensive support needs, these individuals are only eligible for Level I AFC. The Personal Care Attendant (PCA) program requires an individual to need physical assistance with at least 2 ADLs; cueing is not sufficient. This means there is effectively no MassHealth state plan service for people who need drop-in services for cueing, unless they live in certain settings where Group Adult Foster Care (GAFC) is available. Group Adult Foster Care can be used to provide 2 hours/day of drop-in services, but only in assisted living settings or subsidized housing. The latter means that those who need cueing for ADLs and live in project-based housing served by a GAFC agency can access this program, but those who have a portable housing voucher cannot. Broadening the locations where GAFC can be used might also allow individuals to access SSI-G, which pays a higher amount, but cannot be used in combination with a housing voucher. While this might appear to be a negative, there is no waiting list for SSI-G, while the wait for a voucher can be 10-12 years.
Insurance reimbursement: Assistive technology presents many opportunities for individuals to be more independent. Technology can reduce staffing costs, and even allow individuals to live on their own who might otherwise require constant personal supervision. However, getting insurance reimbursement for technology can be difficult.
Voucher shortage: For those relying on SSI as their sole source of income and not prioritized by DDS, housing is essentially out of reach without a subsidized housing voucher. The wait for a portable Section 8 voucher through the Centralized Waiting List can be as long as 12 years, and many other lists are frequently closed. Except for those able to pay cash for real estate, most family-created housing options also require a voucher to be sustainable in the long-term.
Problems with existing housing stock
In congregate settings, there is a fundamental tension between the right to choose those with whom one lives, and the Fair Housing Act. In group homes, compatibility can be a major challenge. However, because public dollars are at play, individuals do not get to choose those with whom they live. The need to provide adequate staffing dictates that small congregate settings (generally five or fewer people under one roof under current DDS policy) will remain an option for some individuals with intensive support needs. Better design options might provide a solution; for instance, individuals might have their own suites, with a variety of shared common spaces.
Features common to multifamily housing and even to traditional single family housing may present difficulties to people with autism. Either sensitivity to sounds or loud self-stimulatory activity can make it difficult for people with autism to live in close proximity to others in the absence of sound-deadening features. Fluorescent lights can be problematic for many people. A desire to avoid interactions with others can make standard entrance areas difficult. Most traditional spaces do not accommodate a need to pace. Some individuals require a more durable environment, such as shatter-proof glass, abuse-resistant drywall, and floor drains. Individuals (or families with autistic children) can find themselves facing eviction in situations that could have been avoided with better architectural design. There is an extensive literature on autism-friendly design that needs to be considered before creating new housing options.
Homelessness — the unknown factor
There is little hard information on autism and homelessness. While many shelters ask individuals about a psychiatric diagnosis, they do not generally ask about autism. More is known about homelessness and disabilities in general. In 2008, about 43% of those using a homeless shelter in the United States had a disability. We also know that in Massachusetts in 2015 there were 1,411 chronically homeless individuals, who are defined as both having a disability and being homeless repeatedly or for a long time. While this does not tell us anything on its face about autism, we do know that there is a high rate of comorbidity of mental illness in people with autism. A group in Florida has begun screening patients for autism at a psychiatric facility, and found that 11% are meeting criteria for a fuller evaluation. They are using a readily available screening tool, the AQ10, that could easily be adopted by shelters in Massachusetts. If the percentages found in Florida were to hold in Massachusetts, about 200 homeless individuals might have both autism and a psychiatric disorder, since the Department of Mental Health (DMH) assumes that at any given time 2,000 people who are homeless have a severe and persistent mental illness.
A further challenge is that homeless autistics may be less likely to gravitate toward shelter. In the U.K., there is evidence that people with autism are disproportionately represented among those sleeping on the streets (termed “rough sleepers”). The characteristics of autism can be a factor in effectively bringing people into shelter. Homeless Link, a U.K. organization, has developed a briefing to help frontline staff dealing with homelessness bring autistic people off the street. Issues not touched on in the U.K. materials that Autism Housing Pathways has encountered anecdotally are difficulty with the organizational skills needed to secure a bed in a shelter and sensory issues that may make most shelters difficult to tolerate.