Module 3. Types of Housing

AFFORDABLE HOUSING  

“In order to thrive, lower income families need housing in healthy neighborhoods with low crime rates, access to quality education, meaningful job opportunities and affordable and reliable transportation options”. (National Housing Trust)

In addition to the housing available through rental and purchase subsidies from HUD Section 8 and Public Housing agencies through Section 9, there is a wide range of housing created by for-profit and not-for-profit housing developers that people with low incomes and people with disabilities may qualify for.  The initiatives that create affordable housing take different forms but their common goal is to increase the supply of quality housing and to sustain communities. This goal might be framed as maintaining economic diversity and permitting people who work in a community to live there – municipal workers, teachers and other essential professions. It might also be to help people who are aging to remain within their communities when they can no longer afford high real estate taxes, or for people with disabilities to remain in familiar and supportive communities. Public policy nowadays seeks to encourage inner-town inner-village density and to reduce sprawl, creating more vibrant downtowns. Affordable housing is an essential element in creating a cohesive community.

The term “Affordable” means that in exchange for agreeing to limit rents and rent increases, the developer has received a financial incentive, typically through Low Income Housing Tax Credits (LIHTCs). From the tenant’s perspective, “Affordable” means that they spend no more than 30 percent of their income on housing.  Affordability means different prices in different places. Generally, affordable housing vacancies are allocated on the basis of a range of income tiers that reference the Area Median Income (AMI). For example, a development might consist of 100 dwelling units of which 80 are to be rented out at market rates, and 20 set aside to be rented at affordable rates to families earning 50% of AMI.[1] It is important to remember that the properties are allocated to people with low income, not no income, but people with I/DD who have Supplemental Security Income (SSI) and some earnings and a housing allowance through ISS or other means will qualify for the lower income levels.  The rents they will pay may be as low as 50% of the market rent for the property, allowing them to live in a decent home and remain part of the community, while making the property more accessible and financially viable for them and for the taxpayer in the event they are receiving a residential subsidy.

To some people “Affordable” might imply that the housing is of poor quality or in an undesirable neighborhood.  There is an historical basis for that prejudice, but the world of affordable housing has changed as the breadth of need has changed. In a series of case studies examining ways to create affordable housing[2] the non-profit organization Business and Professional People for the Public Interest highlighted six important observations:

  • “Affordable housing can be built in character with the rest of the community
  • Affordable housing can be constructed with little public subsidy
  • Affordable housing will work in affluent areas
  • Affordable housing does not have to be constructed in high rise or dense developments
  • Affordable housing can reach a mix of household incomes
  • Affordable housing can be built without a decline in real estate values.”

 

How is Affordable Housing Created?
Government has a long history of intervention in the real estate market. The federal government has provided infrastructure to facilitate development, tax abatements to encourage employment in construction trades, tax deductibility of mortgage interest and other incentives through HUD. Much of the affordable housing creation however takes place at the local level. Local authorities have a range of zoning tools to encourage development. These include “Mandatory Zoning” – requiring that any new development include affordable units, or less formal voluntary guidelines that are negotiated with each new development. Sometimes these “set-asides” rely on the market rate unit sales or rentals to offset the affordable units without public subsidy; sometimes there are direct rental subsidies or property tax incentives. The field requires considerable expertise and experience but there is a mature industry of for-profit and non-profit development companies that are well versed in the structuring of incentives, zoning, community needs and preferences and federal and state subsidies. From the perspective of people with I/DD, the question is less about how to create affordable housing and more about how to connect with developers, real estate agents and non-profit groups that act as the gatekeepers to affordable housing.

Where to Find Affordable Housing
New York State Housing and Community Renewal (HCR, formerly DHCR) has an interactive website that provides information on available rental housing, “NYHOUSINGSEARCH.gov” http://www.nyhousingsearch.gov/. The site lists properties by city and county, across different sizes and includes developments that have reduced rents as low as 50% AMI.

As described above, affordable housing is a very local affair. Your community may already have an Affordable Housing Corporation, a Community Land Trust, a Land Bank, a Housing Partnership or a Redevelopment corporation. The municipal or regional administrator of HUD Section 8 programs can be a resource for connecting with developers and property managers of affordable housing. 

Supportive Housing
The group home system for people with I/DD that we have now was created in the 1980s and subsequent years in large part by the then newly established Office of Mental Retardation and Developmental Disabilities, (OMRDD now OPWDD), the requirements of the Willowbrook Consent Decree, and the advocacy of provider organizations and families. The mid 1970s furor over Willowbrook and other institutions for people with I/DD was happening at the same time that deinstitutionalization was scaling down psychiatric hospitals and mental health institutions.  People with mental health needs did not receive the same level of support as people with I/DD.  People with mental illness who had been discharged from institutions in the late 70s and the 80s frequently had little discharge planning or support and became homeless, with meager resources to provide for their daily needs or their long-term care. The rapid deinstitutionalization period coincided with a shrinking of available housing stock and Single Room Occupancy (SRO) hotels in New York City that had formerly been a housing option, but which had degenerated over time. The emergence of Supportive Housing was in response to this desperate need and is itself a triumph of practical advocacy.

To quote the Supportive Housing Network of New York website,[3] “Supportive Housing is just that; Housing plus support.”  Originally created to address the housing needs of older adults it has since evolved as an effective way to address the housing and long-term supports and services needs of a broad range of people. The primary format is for a non-profit organization to own or control the property, rent the accommodation to tenants at an affordable rate, and to either import services from a separate organization or to provide them themselves. Services include benefit optimization and physical health and mental health care, but they may also include recreation, food services and other support. NY State now has 45,000 units of supportive housing, most of them in New York City.

Housing for people with I/DD from the 1970s until now has developed differently to housing provided to people with mental health disorders and substance abuse disorders and chronic health conditions including HIV or AIDs. In some ways people with I/DD have been provided for more generously perhaps because as a result of advocacy and the visible horrors of Willowbrook there was more funding per capita than that provided to some other people with long-term support needs.

Systems tend to categorize people, steering them to the service providers that appear to be the best fit for their primary diagnosis, whether those systems be run by OPWDD or the Office of Mental Health (OMH), or the Office of Addiction Services & Supports (OASAS). Real people do not fit so neatly into categories. Per the Medicaid Redesign Team Final Utilization report (2017)[4] “The OPWDD Expansion Program serve(d) persons with developmental disabilities (n=51), most of which fall under the ICD-9 category of mental disorders. However, 61% additionally have an active Serious Mental Illness diagnosis. Forty-one percent of this population has a chronic medical condition, and 10% have a substance use disorder. None have HIV. Four percent have a mental health diagnosis, a substance use disorder, and a chronic medical condition in addition to their developmental disability. Only 29% do not have any of these conditions”. As a community we have to learn about other housing options that will work for real people with complex needs and supportive housing is a model that is already serving thousands of people effectively and sustainably. This is the case with Affordable Housing.  It is a mature industry with professionals who know how to negotiate the system. Families, advocates and I/DD provider agencies would do well to reach out to the Supportive Housing industry, to understand how Supportive Housing can be created and to collaborate with existing providers.

Shared Living
The term “Shared Living” is used to describe arrangements where a person or persons with a disability lives with other people who do not have a disability. Typically the person without a disability is provided with a lower rental cost or a (possibly tax exempt) stipend in exchange for providing agreed upon supports to the person with a disability. These arrangements can be fostered by a provider agency that can assist in finding roommates, providing training and back-up staffing, or they can be negotiated privately. There are many examples of such relationships working extremely well, but to be successful they require significant planning and relationship building. Agencies have adopted some of the funding methods used in Family Care to create shared living environments in which the person or persons with a disability moves in with a person or family. In the event that the relationship doesn’t work there needs to be an exit strategy with an alternative home for the person with a disability. If the person with a disability is the homeowner/lessee and the relationship sours they may be required to evict  their support person. In some cases there may be personal risk to living with the support person and the homeowner may even have to leave his or her own home until a solution is found. Shared living has worked in many instances and is used in other states but requires significant scaffolding and planning to be practical.  The National Association of State Directors of Developmental Disabilities Services (NASDDDS), the American Network of Community Options and Resources (ANCOR), and the National Association of States United for Aging and Disabilities (NASUAD) have developed a model shared living contract designed to be used as a template by providers entering into certain shared living arrangements. The contract is available at   https://www.nasddds.org/resource-library/general-information-on-administering-state-programs/family-living/model-shared-living-contract/

In 2017 NYSACRA, (now the NY Alliance) developed a “Shared Living Toolkit”.  It is an invaluable resource that provides detailed guidance on practical steps to Shared Living including information on relevant labor law and practices. To quote from the Shared Living Toolkit (p.5) “There is no single definition of shared living…..Most definitions share common elements:

  • Persons with and without disabilities share their lives, especially in their domiciliary arrangements.
  • Typically, the person without a disability provides supports to the person with a disability, although the extent and nature of those supports vary widely.
  • Shared living is not a “placement” of one person into another’s home. It is a mutually agreed upon arrangement.
  • Shared living encompasses both persons who live together in the same four walls and those who live quite near to one another (e.g. in adjacent apartments). These are referred to as live-with and live-near support arrangements.


When properly designed and supported, shared living provides an alternative to group living models predicated on shift staffing. Typical staff-client relationships are disrupted and the boundaries between work and personal lives become blurred. As the NASDDDS states, “shared living offers the opportunity for both a close personal relationship and a place to live.” [5]

To learn more about Shared living visit the NYHRC website and view the webinar “Shared Living” presented by Christopher Liuzzo as part of the 2019 Statewide Learning Institute”: https://youtu.be/kxQqrEizJoo


Intentional Communities
The language we use when talking about services for people with I/DD frequently refers to “community”. “Community-Based services” are seen as superior to Center-Based, or Institutional services.  People living in group settings go for outings “in the community”, CMS created “Home and Community Based Services”, which are carried out by DSPs providing “Community Habilitation”. It is a fair bet that every Life Plan in the state includes a goal to spend more time “in the community”. While well intentioned too often “going into the community” means being shuttled around in a controlled group with little genuine interaction while still being visibly segregated.

What is an Intentional Community?
An Intentional Community “is a group of people coming together in a place they create to live in some particular way.”[6] Intentional Communities have been part of our history for many hundreds of years. They include religious and spiritual communities, convents, monasteries and, in modern times, communes, kibbutzim, ecovillages, artist retreats, homesteads, farmsteads and co-housing. In the world of housing for people with I/DD “Shared Living” is also a form of Intentional Community.  In 2018 the NY Alliance received funding from the Falco Foundation to create the publication “What Happens When I’m Gone”.[7]  Pages 38-51 of the publication report on a series of visits to Intentional Communities and observations on the relevance to housing for people with I/DD in New York State. In brief, an Intentional Community would include the following factors:

  • An intention
  • A core belief in specific values and goals
  • An established system of governance
  • Clear entry criteria and processes including the choice for each member to remain or to leave the community
  • Inclusion at all levels for people with I/DD in making decisions on issues that concern them

 

What Works?

  • Intention. Sometimes expressed as a “vision statement” or a “mission statement”.  Simply put, the key element in sustainability is the core Intention. The Intention needs to be clear and realizable. For example, if a community is to be devoted to self-sufficient farming there need to be members with farming experience, agreed location, markets, and a strong commitment to work by all involved. Communities that by intent include people with I/DD as part of their mission have an additional challenge.
  • Communal activity. Well-structured communities have regular get-togethers. Typical Intentional Community meetings include extensive discussion of communal business issues and governance.
  • Successful communities expect all members to help in providing for the community, whether that be conventional paid work off-site or on-site farming, craftwork or maintenance. People who choose not to work are essentially choosing not to be part of the community and should leave.
  • Volunteers and life-sharers. The communities we met with while preparing “What Happens When I’m Gone” were in some ways conventionally funded IRA or ICF houses with DSP shift work. However, they were able to change the shift-based atmosphere by the infusion of volunteer support. Having more people of all ability levels in the social mix disrupts the supervision culture and replaces it with an easy familiarity and a balance of natural and paid support.
  • Integration. An Intentional Community does not mean an isolated one. The majority of the successful Intentional Communities we met were also active members of their local communities and represented in its civic and social life. A healthy Intentional Community is not a place to hide from the world.

 

What Does Not Work?

  • Being founded just to alleviate housing needs

Successful communities have a clear idea and articulation of their core tenets - which do not include “there are no other housing options available”. Successful communities require commitment from the new member to endorse and willingly accept the community’s values and practices and their induction processes identify where such acceptance is present or potentially likely. 

  • Failure to adapt to changing society

The last 40 to 50 years, the age of deinstitutionalization, have seen a transformation in how disability is seen by people with disabilities and by society in general. Disability rights advocates have been able to bring about anti-discrimination legislation, increase accessibility and reduce social stigma associated with disability. People with I/DD expect to be treated without condescension as peers of the people they live with.  They want to be self–determined and have choice as to where they live and with whom. Sometimes this is different to the direction their parents or family members might be intending for them. In its publication “There’s No Place Like Home” the National ARC noted that 87% of the family members whose relative with I/DD lived in a planned community or campus where only people with I/DD live were happy with where their loved one lived. By contrast only 16% of the people with I/DD who were surveyed and who lived in planned communities wanted to remain there.[8]

  • Failure to adapt to new funding

Since the introduction of Money Follows the Person (MFP) funding in 2005 public funding has begun to gradually shift from the agency provider model to individualized budget control with the agency acting more as a vendor than a provider. Long standing communities have adapted to varying degrees to this change and have had to develop financial sophistication to match the new diversity of funding sources.

Why are Public Funding Sources Wary of Intentional Communities?

  • The state is not averse to Intentional Communities in principle

Depending on the experience of each Regional office and other variables New York State has been supportive of different shared living arrangements for many years and has been receptive to expansion of small scale urban single residence settings. However, the state is also clear that it does not wish to support any new large-scale settings.

  • Regulation & Funding

Public service regulators are bound by what they are permitted to fund and by the need to avoid risk, especially anything that will create political pressure. The HCBS Settings rules do not permit waiver funding in settings “that have the effect of isolating persons receiving Medicaid-funded HCBS from the broader community of persons not receiving Medicaid-funded HCBS”[9]

  • History

New York’s institutional history, chronicled so thoroughly in Paul Castellani’s “From Snake Pits to Cash Cows” [10]  is shameful. Institutions that were created with the best of intentions such as the “model” self-sufficient agricultural community of Letchworth Village in Rockland County, founded in 1911, deteriorated into the “Snake Pits” that Robert F. Kennedy described after his visit to Willowbrook in 1965. Advocates for people with disabilities, including self-advocates, sued the state to end the terrible abuses occurring in the institutions. Every aspect of services for people with I/DD in New York is infused with the history of Willowbrook, Letchworth, Rome and the twenty or so institutions that at one time warehoused tens of thousands of people. The Office of Mental Retardation and Developmental Disability, (OMRDD), now OPWDD, was created as a direct result of the institutional scandals and essentially charged with ensuring that such conditions were eliminated and never happened again.   OPWDD staff is deeply imbued with the historical perspective that large-scale settings inevitably lead to isolation, neglect and abuse, and they will not tolerate the potential for that to happen on their watch.

  • The Precautionary Principle

The precautionary principle is used by public funding agencies to provide a basis for financial decisions when they have evidence of best practice. Its purpose is to “protect the public from exposure to harm, when scientific investigation has found a plausible risk. These protections can be relaxed only if further scientific findings emerge that provide sound evidence that no harm will result.”[11] As noted above there is a substantial body of research that demonstrates that smaller more integrated settings generally lead to an improved quality of life and sense of fulfillment for people with I/DD. [12] 


[1] NY State HCR Publishes a listing of AMI levels by county ranging from 30% AMI to 166%. List is available at http://www.nyshcr.org/Topics/Home/AHCIncomeLimits.pdf retrieved July 2020
[2] A Community Guide to creating Affordable Housing. BPI Regional Affordable Housing Initiative 2005 available at www.bpichicago.org. Retrieved June 2020
[3] http://shnny.org/learn-more/what-is-supportive-housing/ retrieved July 2020
[4]  https://www.helio.health/wp-content/uploads/2018/06/Medicaid-Redesign-Team-Supportive-Housing-Evaluation.pdf Retrieved July 2020
[5] Shared Living site NASDDDS http://www.nasddds.org/resource-library/general-information-on-administering-state-programs/family-living/ retrieved May 2018
[6] Website of Meadowdance http://www.meadowdance.org/basics.htm retrieved March 2018
[7] Available at the NYAII website https://nyhousingresourcecenter.starchapter.com/images/downloads/nyaii_what_happens___intentional_report_10_04_18_final.pdf 
[8] “There’s no place like Home” CQL and the Arc https://www.c-q-l.org/resources/guides/theres-no-place-like-home-a-national-housing-study/ retrieved July 2020
[9] Summary of key provisions of the HCBS settings rule Op.Cit
[10] Castellani, P.J. (2005). From Snake Pits to Cash Cows. Albany, NY: SUNY Press.
[11] From The Precautionary Principle website http://www.precautionaryprinciple.eu/ retrieved May 2018
[12] National Council on Disability meta Study “HCBS Creating systems for success at home at work and in the community”  https://www.nasddds.org/resource-library/general-information-on-administering-state-programs/family-living/home-and-community-based-services-creating-systems-for-success-at-home-work/ retrieved February 2020