Chapter 8: Toward a More Friendly Environment for Consumer Controlled Housing

Introduction

This chapter is about environmental change. Not about the natural environment, but about the political, attitudinal, financial, and regulatory environments that must continuously be shaped to support the rights of people with developmental disabilities to have the opportunities they want and to live as fully as other citizens of the community. The people who have told their stories in this book have successfully gained control over their housing and have realized their visions in spite of an environment that has often been unsupportive at best. But if consumer controlled housing continues to require the savvy, determination, personal and family resources, or - often - the luck that was involved in these achievements, people controlling their own homes will remain all too rare an occurrence. In 1998, Minnesota's state information system indicated that there was a total of about 6,800 people who received long-term care under that state's Medicaid Intermediate Care Facility and Home and Community-Based Services Programs. Of these individuals, only 4.9% were in their own homes (places that they themselves rented or owned). So even as individuals, their families and friends and case managers, service providers, housing specialists, bankers, and others undertake individual efforts to arrange for consumer controlled housing situations, it's important that an environment in which control of the housing by the consumer is the expected outcome for those who want it, with few barriers and much support. There is still much to accomplish.

Recent Moves Toward Consumer Control

The good news is that the environment that has long discouraged people's opportunities for personal housing is changing - at the national and state levels, among the county human services agencies, in the banking industry, and in the advocacy community. In Minnesota, advocates have successfully sought a legislative change in the Homestead exemption statute that fosters greater control of housing by persons with developmental disabilities. Others have created homes for people in rehabilitated foreclosed houses owned by the U.S. Department of Housing and Urban Development (HUD) through the innovative use of a federal and a state program. Lending institutions in Minnesota have been working with advocates, state and local housing officials, and state and local social service agencies and housing centers to make obtaining mortgages easier for those who promote consumer controlled housing. Dozens of county case managers have attended training sessions on consumer controlled housing.

At the Department of Human Services (DHS), based on the findings of an internal study committee which estimated that DHS controls over $300 million in funding to purchase housing for its clientele - including persons with developmental disabilities - the commissioner set a housing initiative for the department in 1994. This represented DHS's first significant effort to look at the needs of the people it serves from a housing perspective. In addition, DHS successfully sought permission from the federal government in 1994 to include a new service under its developmental disabilities waiver that provides assistance to persons wanting to establish their own homes in the community. That was the good news. The bad news was that four years later the service went unused. Also in 1994, the Minnesota Housing Finance Agency adopted for its "permanent housing" programs the policy of giving priority to projects where the owner of the housing is not the provider of services. The significance of this policy is described later in this chapter.

In 1994, the President's Committee on Mental Retardation issued a report featuring significant observations and recommendations concerning consumer controlled housing. The report, entitled The National Reform Agenda and Citizens with Mental Retardation: A Journey of Renewal for All Americans, stated that changes in federal policy will be "crucial" to developing consumer controlled housing. Significantly, the committee notes that "the federal government has considerable leverage through its housing programs, income support policies, and public relations efforts. Through modifications in these programs, the federal government can play an affirmative leading role in housing reform for people with mental retardation." The committee also recommended that the government "should affirm the principles of choice and control in housing policy for people with mental retardation."

While developments and recommended future directions are encouraging, much still needs to be done to make an environment in which Minnesotans with disabilities find it easier to control their housing. Here are a few things people and groups can do:

• Create greater access to workshops and counseling services through which persons with disabilities, their family members, service providers, case managers, and others can learn how the funding of services and housing for people with developmental disabilities can be integrated to provide people with homes of their own with the support they need. These workshops and counselors can help people understand where funds come from, how they are spent, and benefits derived from them. Often times, public dollars invested in real estate end up on the balance sheets of large corporations.
• Develop a foundation of knowledge among those who can help, such as attorneys, local social services officials and case managers, mortgage lenders, and real estate brokers. Educate and organize these potential allies by providing information, sharing your vision, and helping them meet and learn from people who now control their own housing.
• Look for creative approaches others have developed. While Minnesotans have much to be proud of in their accomplishments in human services in general, and consumer controlled housing in particular, efforts in several other states surpass Minnesota in preparing a more friendly environment for consumer controlled housing, including innovative financial assistance programs for cash assistance, leases, rent subsidies, and vouchers. Examples of creative programs in other states are described on page 73.
• Work for change - in laws, regulations, lending policies, and attitudes. Educate officials - those in Congress, the state legislature, county board of supervisors, and administrators in public housing authority. Remember that the needs of their constituencies are many. Sometimes their attention to an issue can be short. Getting to know real people with real stories often is more memorable and motivating than a list of policy suggestions. The education needed by most policymakers is not just technical, but philosophical as well.

Increased consumer control of housing can seem like a hard sell, but people's right to have a real home is so intertwined with the perceived quality of life of Americans that the idea is for most people commonsensical. The challenge is to accomplish such an outcome without necessarily costing taxpayers any more money. It is important to help people understand that the amount of public funds granted to an individual to help pay a subsidized low income mortgage or rent is often less than the amount granted to a service provider corporation to pay a commercial rate mortgage of the same amount for an equivalent property. Housing for people with developmental disabilities is subsidized; the issue is to whom the subsidy should go - to people with disabilities or service provider agencies.

Separating Housing from Supports

One fundamental environmental change that can foster greater housing control for persons with developmental disabilities is the separation of housing from supports. Remarkably, even today most Minnesotans with developmental disabilities who receive residential services have housing arrangements that are purchased as a package with their support services. For example, the needs of persons living in ICFs/MR are met through a single rate that includes services, room, and board. Most Minnesotans receiving Medicaid Home and Community-Based Waivered Services live in so-called "corporate" foster care settings, in which service providers typically obtain, and for the most part control, the housing.

This isn't the case in other places. Separation of housing from services in community-based settings has been a formal policy in a number of states. This concept isn't new in Minnesota either: it's been discussed, debated, and lobbied in the developmental disabilities community for years - in rule committee meetings, in advisory reports to state officials, and at the legislature. Nonetheless, services and housing are still bundled for most Minnesota developmental disabilities residential services.

Whenever there is a proposed shift in how public funds are spent, those who stand to lose ground will lobby against the proposal. But while some Minnesota providers favor the status quo, more progressive service providers have been working for years with persons with developmental disabilities and their families to establish homes that consumers control!

Often the route for people with developmental disabilities wanting to obtain a home of their own has begun with their choosing a service provider who is committed to that end. But government has a role, too. As observed by a housing task force brought together by the President's Committee on Mental Retardation: "People should have stable homes while fully exercising their right to choose the agencies who enter their homes to provide supports. Federal and local policy should affirm the separation of all programs specifically funding services or housing."

Creative Approaches in Other Places

There are places outside Minnesota in which people with developmental disabilities and those who assist them find it much easier to develop individualized housing approaches that they control. Learning about them is a good way for local groups to develop better approaches of their own. Here are a few examples:

Movin' Out

In 1992, "Movin' Out" was the name given to themselves by a group of parents of teenagers with disabilities who were concerned about how their children would transition from their family homes to independent living. Many of these teens were receiving some support from the human services system in Wisconsin, but were faced with long waiting lists for services or assistance, particularly in the area of housing, when they reached adulthood.

Movin' Out grew from this parent group to a viable, non-profit organization. A grant requested by the parent group and received from the Wisconsin Division of Housing allowed the parents to contract with a housing organization in Dane County to provide them with technical assistance and lay the groundwork for what has now become Movin' Out, Inc. In mid-1997, one full-time staff person was hired to provide housing counseling. Her work was heavily supplemented by an extremely active Board of Directors and significant assistance and training from the state's Housing Specialist, also a parent of a child with developmental disabilities.

Movin' Out helps to create opportunities for people with disabilities and their families to establish and maintain their own homes in housing of their choice - housing that is safe, affordable, accessible and integrated. Movin' Out devotes its energy and resources to development of small-scale, integrated housing arrangements that do not congregate people with disabilities.

In the past two and a half years, Movin' Out has assisted 58 low-income households to purchase or rehabilitate a house or condominium leveraging more than two million dollars in conventional financing. The households represent 78 individuals with disabilities and 134 total family members. Subsidies in the form of low-interest or deferred loans have comprised only 19% of the money used for this purpose. The primary source of funding has been conventional mortgages and the rest of the money has come from buyers and/or their families.

In 1999, Movin' Out expanded both geographically and programmatically and hired a second housing counselor and a part-time executive director. It now has both local and statewide roles, but the roles are different. In Madison, it has contracted to loan federal HOME funds to low-income households who have a member with a disability. These properties must then remain as affordable housing for up to 80 years. It is also involved in a mixed-income condominium development to be completed in 2000, with a minimum six of the 23 units guaranteed for low-income households/persons with disabilities. Movin' Out's original parent group remains active, involved, and committed to a diverse community with affordable housing. Many of the former "teens," now young adults, are in apartments or homes of their own.

MI Home Program

Michigan's State Housing Development Authority is currently operating the MI Home (More Independence through Home) Program to assist non-profit agencies to acquire one to four unit residential properties for rental by persons with disabilities. A goal of the project is to make rental housing affordable to persons with modest incomes (participants pay no more than 30% of their income for rent). Prospective tenants are primarily persons with a history of residency in an institutional setting or foster care.

The non-profit sponsors are expected to assume a primary role as owner and landlord, although they may employ professional housing managers to handle day to day operation and leasing. Program requirements state that non-profit board members may not be employees, officials or board members of state or local agencies responsible for funding services which are or could be used by program participants. Sponsors must have a feasible long term support plan for its residents.

The program is funded through federal funds from the HOME Program through the Department of Housing and Urban Development.

Mortgage Program for Persons with Developmental Disabilities

The state of Rhode Island has made $600,000 available for home ownership for persons with developmental disabilities in a one-year demonstration project called the Mortgage Program for Persons with Developmental Disabilities. New and existing single family homes and condominiums requiring minimal maintenance are eligible for purchase. Staff from the state Housing Mortgage Finance Corporation are available to help consumers in searching for property. Staff from the state Department of Mental Health, Mental Retardation and Hospitals will also evaluate properties relative to needed community services, structural condition and maintenance needs.

A home buyer counseling component has been built into the demonstration. The Housing Mortgage Finance Corporation provides initial counseling to make sure participants consider the various housing options available to them and the responsibilities that home ownership involve. A Home Ownership Guide has been prepared for this purpose. After a home is purchased, the corporation provides counseling at both six and twelve months after closing, and then as needed after that. Funding for this project have been made available through a bond issue approved by the state's voters.

Home of Your Own Project/Alliance

New Hampshire's Home of Your Own Demonstration was first implemented through the state's Mental Health and Developmental Services Department and the state Housing Finance Agency (HFA) in collaboration with the University of New Hampshire's Institute on Disability, the state Developmental Disabilities Council, and the state Disability Rights Center. From this beginning in the late 1980's, the project grew into a National Home of Your Own Alliance to assist other states in developing home ownership programs. The original New Hampshire program permits purchase of single family homes and condominiums with a maximum purchase price of $100,000.

The HFA set aside $1.5 million of its standard first time buyer program especially for persons with developmental disabilities. For down payment and closing costs, the HFA budgeted an additional $100,000 which was matched with another $100,000 from the Mental Health and Developmental Services Department. Funds are made available to the participants as grant-like second mortgages. In addition, federal funds from the HOPE program have been used for down-payment and closing costs, necessary general repairs, and accessibility modifications.

The HFA has originated the mortgages, in part to retain control, and in part because community lenders weren't interested in participating due to the extra paperwork involved. From the original New Hampshire project, the National Home of your Own Alliance grew to projects in 23 states. Although considerably curtailed since 1999, technical assistance, information, print materials, and support are still available.

Community Capital Assistance Project

Ohio's Community Capital Assistance Project purchases housing for persons with developmental disabilities who require supportive living services. The consumer takes an active role in selecting the type and location of the housing, who their roommates will be, and how the home is furnished. Existing properties (no new construction is permitted) are acquired with the assistance of local real estate brokers. The consumer is assisted in his or her selections by a local non-profit (such as a community action agency or a local Arc chapter). Each county board of mental retardation that participates in the program (67 out of 88 counties) is responsible to select or set up the non-profit agency that provides the assistance to the consumers. When properties are sold, the proceeds must be reinvested in other acceptable housing.

By 1998, 585 properties had been acquired, housing 1,465 clients. State funds provided $23 million for property valued at $40 million. The state of Ohio has budgeted $3.9 million for fiscal year 2000 and expects to allocate another $9.6 million in 2001/2002. The program is operated by the state Department of Mental Retardation/Developmental Disabilities, using funds raised by the Ohio Public Facilities Commission.

Equity Fund for Community Integrated Housing

In Illinois, the Equity Fund for Community Integrated Housing uses federal low-income tax credits to assist local organizations to develop affordable single family homes, condominiums, townhomes and duplexes as homes for three or fewer people with disabilities. To ensure separation of housing and services, properties must be managed by a local development corporation that is not affiliated with the service provider. The program is designed to allow persons with developmental disabilities to buy or otherwise control their housing units.

An example of a development funded by this fund is a program run by a non-profit agency in suburban Chicago which purchased three two bedroom condominium units in one building and three in another building. The agency received equity from a corporate investor and debt financing from the state's Housing Trust Fund. Under the program's guidelines, a newly-created limited partnership will own the property for fifteen years, but will be managed by the non profit agency. During the fifteen-year period, the corporate investor will continue to receive the tax credits. At the end of the fifteen years, the property can be sold to either the non-profit or the consumers who live there.

The Affordable Housing Trust Fund used by this agency for its project's debt financing is run by the Illinois Housing Development Agency, which has adopted housing for people with disabilities as a priority area. Other examples of how the funds can be used include down payment assistance, interest rate markdowns, housing rehabilitation and construction, and other forms of subsidy.

The tax credits, which are a central feature of the Equity Fund's design, are allocated to each state by the federal government, and can be obtained by private investors in return for developing housing for low income individuals.

An Issue of Freedom

Securing attention and support for consumer controlled housing in a time of waiting lists, staff shortages, and budget restrictions can seem like an uphill battle. In the midst of state and national discussions of people's needs for energy assistance, welfare-to-work, job training, medical service access, housing assistance for impoverished families, shelter for homeless persons, and psychiatric services for persons with chronic mental illness, expecting or demanding personalized housing for people with developmental disabilities may seem almost selfish. People with developmental disabilities, their families, and their allies have achieved so much in recent decades; is it fair to seek more? The daily reality of people's lives makes it clear that more must be expected. The significant gains in funding, the growing flexibility in community supports and providers available to people with developmental disabilities, and the changing public attitudes that respect the rights of people with developmental disabilities and their place in the community are hollow advances to those people who do not even enjoy control over their own front door and who do not live where, how, and with whom they choose.

This issue demands the attention of legislators, federal and state officials, county supervisors, housing authorities, service providers, advocates, and others who control decisions about where and how people with developmental disabilities receive services. Changes in policy and expectations can give adults with developmental disabilities a basic freedom and dignity of having a home of their own. The quality of life for persons with developmental disabilities depends on such freedom because, as persons who often require intensive life-long support, without it people too often become economic and social dependents of those who provide both housing and supports. Because of this, it's important that persons with developmental disabilities, their families, advocates, and the human services professionals who would be their allies continue to struggle for the dignity and self-determination that derives from people receiving the support they need in homes that are their own.

Sidebar:

A Home for Darin

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A Guidebook on Consumer Controlled Housing for Minnesotans with Developmental Disabilities, a joint publication of Arc Minnesota and the Research and Training Center on Community Living, Institute on Community Integration (UAP), University of Minnesota.