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I. A BRIEF HISTORY OF HOUSING FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES

Excerpted in part from Patterns of Supported Living. Allen, Shea and Associates, (1993)

In the mid-1800’s, state institutions (also called state hospitals, colonies, training schools and developmental centers) were created. During the post WW II period, parents began to organize and form coalitions to insist on community alternatives to institutional treatment. In Oregon, families developed private residential facilities, workshops and basement schools.

In the late 1960’s and early 1970’s, the group home concept caught on . People with similar needs began living together in what seemed reasonable and cost effective (6-15 person) homes. In theory, they would be able to move on to less-restrictive places to live as they developed more skills and achieved greater independence. This was called the developmental model. It said that when a person learned enough, they would earn the right to move into a group home with less supports and then to an apartment. This model proved unsuccessful when many residents got “stuck” in one spot on the continuum and did not progress.

In the early 1980’s came the realization that no matter how talented a teacher or care giver was, many people with developmental disabilities would never be “ready” to move to their own place if “readiness” was defined as being able to accomplish something in the “usual” way. The logic of the developmental and readiness model was questioned.

During the 1980’s, the civil rights movement and consumer self-advocacy started to question the inequity and rigidity of the service system for people with developmental disabilities. Self-advocacy groups began asserting their rights to equal access and choice in services in local communities. The right to live “where I want to live” energized individuals and families towards new community living options.

During the 1990’s, families and self-advocates fought for more choice and control over service design and delivery. Then insisted that services be individualized to meet their particular needs and preferences. They also gained more control over public funding so they could purchase the services and supports they wanted. This self-determination movement continues to shape the service system today.

II. VALUES BASE

Values that have motivated and guided the movement toward community supported living arrangements include:

Choice and Self-Determination

Choice should be encouraged and supported in all aspects of a person’s life. People have a right to attempt to fulfill their dreams. If people have control over where and with whom they live, they are more likely to feel invested in making it work (for their own reasons) if difficulties arise.

Historically, both housing and support services have been provided by the same agency, requiring a person to live in a certain type of facility to obtain a certain level of support. By separating housing and support services, people will not need to move when they change their support services. This is another way to support peoples choices.

Homeownership and Control

By signing a lease, rental agreement, or mortgage, an individual with disabilities gains control or ownership of his or her housing in a meaningful and tangible way.

Interdependence

refers to the valuable mutual support that is given and received through individual relationships and social networks. Independence from family and paid support was once seen as the ultimate evidence of success or “making it”. Independence can be isolating and depressing. The importance of relationship and interdependency in all of our lives cannot be overstated. Instead of independence, the goal is to help people develop and maintain meaningful, supportive relationships.

Individualized and Flexible Supports

Strategies for supporting people in their own homes should vary for each individual and reflect a unique combination of services, adaptations, goods, and assistance from paid staff, neighbors, families, and friends. Decisions should be driven by the unique choices, needs, and satisfaction of each individual with disabilities.

III. DEVELOPING A VISION

In the developmental disability field, issues, problems and dilemmas have generally been framed from the perspectives and interests of agencies and professionals. Often for people with developmental disabilities, this has meant housing options are limited to “slots” available in group homes or in supported living programs. It is important that families and persons with developmental disabilities carefully explore the various housing options available in the community before deciding on one specific model. In the area of housing, a person might choose between living in an apartment, renting or purchasing a house, owning a share in a cooperative, purchasing or renting a condominium, living in a supported living program, living alone or with a house mate, or living in a group home. It is most effective if both the son or daughter and the family participate in exploring the possible community options. One way to assist that exploration process is through Person Centered Planning.

Person Centered Planning

Person-centered planning (sometimes called Personal Futures Planning) is one way to encourage choice. It is a process used to help people with developmental disabilities and their families focus on hopes and dreams for the future and figure out the support they may need to get there.

In a Person Centered Planning meeting, the person with the disability should be the central focus of the meeting and should participate as actively as possible. That person should help to plan what the meeting is about. Family, friends and supporters are invited to talk with the focus person about where she would like to live, what she likes to do with her free time, job options, support needs, hopes, fears, dreams, likes, dislikes, and anything else that pertains to her future plans. Participants should assist the person to think about what she likes, what she’s good at and what her dreams for the future are. They can help her plan ways to make her dreams come true. They can also share their dreams for her.

A trained facilitator runs the meeting. This person will ask questions and make sure the meeting works for the focus person. The facilitator writes all the ideas on paper so that everyone at the meeting can see the ideas.

To find out if there is a trained Person Centered Planning Facilitator in your area call the Oregon Technical Assistance Corporation at (503) 364-9943.

Person Centered Plans are plans for the future. They are only effective if a person’s family, supporters or advocates meet regularly (every month or two) with the purpose of moving the plans forward.

Know Your Options

• Whether or not you use a Person Centered Planning process, you and your son/daughter will need to know what options are possible. When exploring options you should:
• Talk to other families around the state who have established housing opportunities.
• Assist your son/daughter to visit a variety of housing situations which could include: apartments, shared households, condominiums, co-housing units, single family homes, renting a room in someone’s house, group homes, and other arrangements that may interest you.
• Read the section in this resource guide titled Exploring Housing Options (Section 1-10). This section lists some positives and negatives to know when considering between options.
• Think about what types of situations your son or daughter prefers. Talk with your son or daughter about his/her preferences.
• Use the Planning Work Sheet in this resource guide (Section 1-6) to begin to examine your families resources, desires and needs for support.

Remember: Choice should be encouraged and supported in all aspects of a person’s life. If a person participates in deciding where and with whom they live, they are more likely to feel invested in making it work (for their own reasons) if difficulties arise.

References and Resources for Person Centered Planning

The Arc of the United States (1991). A Family Handbook on Future Planning. The Arc, 500 East Border Street, Suite 300, Arlington, Texas 76004

Beth Mount and Kay Zwernik (1988). It’s Never Too Early It’s Never Too Late: a Booklet About Personal Futures Planning. St. Paul, MN: Metropolitan Council’s DD Case Management Project.

Allen, Shea & Associates & Claudia Bolton Forrest (1993). Patterns of Supported Living, A Resource Catalogue. 1040 Main Street, Suite 200B, Napa, California 94559

Racino, Walker, O’Connor, Taylor (1993). Housing, Support, and Community. Paul H. Brookes Publishing.

Path Planning, Alternative Tomorrows with Hope. (1994) (a video tape) Inclusion Press, 24 Thome Cresent, Toronto Canada, M6H255. (416) 658-5363

Tool Go to Planning Worksheet

IV. EXPLORING HOUSING OPTIONS

In order to choose the type of living arrangement that matches one’s lifestyle, it is necessary to know what options exist. For this reason it is preferable for an individual to visit or even sample various options in living arrangements. If a person has lived only in the home of his family, or has lived most of his life in an institution, he will not know what options exist. One way for families and advocates to support the opportunity for real choices about living arrangements is to provide the person with the opportunity to visit a wide variety of living arrangements. Here are a few types of living arrangements that could be explored:

1. LIVING WITH THE FAMILY (and possibly remodeling the family home) This option is a way for families to stay physically near their son, daughter, or other relative and increase the chance for privacy and independence for all. If this option is selected, parents and son or daughter should decide in advance how much involvement they will have in each other’s daily lives. While modifications to the family home may not be required, some possible ways to increase privacy and independence include modifications within the family home, converting the basement to an apartment, building a granny unit, or converting a garage into a studio.

PROS: Increased privacy and independence for a son or daughter
with a disability. The continued ability of the parent or parents to stay directly involved with their son or daughter. Parents are close at hand in case of an emergency and able to closely monitor the activities or care of their son or daughter.

CONS: Could limit the amount of independence of the daughter or
son and/or parents. It is sometimes very difficult for families to recognize the desire of young adults even with severe disabilities, to live away from home. The family will need to be aware of the level of independence that they are allowing their son or daughter to experience.

FUNDING OPTIONS: Although there is no single funding source available on the national level for home modifications for accessibility, several resources might provide financing on the local state levels. These include: Community Development Block Grant funds, tax-exempt bonds, Farmers Home Administration Section 504, landlord financing, loans from the state or city for accessibility programs. (Turn to Housing Finance, Section 2-5 or Making Your Home Accessible, Section 4-1).

2. RENTING - An individual can choose between renting an apartment, a house or a room in someone else's house. Renting involves making a formal written agreement with the owner about how much will be paid (usually monthly) for the space. If needed, help the person with the disability understand the lease agreement and his/her obligations. Try to explain it in simple language and give examples.

A. Renting in General

PROS: Gives the renter freedom to change their living situation when the lease expires. Neither the person with the disability nor their advocate are responsible for major repairs to the unit or building.

CONS: The agreement will specify how many people and pets
can live with the renter and will usually specify the length of the agreement. The owner is not required to extend or renew the lease agreement even if the renter wishes to remain in the space.

CONSIDERATIONS: Landlords often require first and last month’s rent and a deposit upon moving in. Consideration will need to be given to the issue of who should hold the lease in their name. It can either be held by the person with the disability, the family, or a care providing agency. Whenever feasible, the person with the disability should hold the lease so s/he is given as much choice and control as is possible. Sometimes choices will be limited because of finances. Managers will usually want to see what type of credit history the prospective renter has. A family member or advocate can sometimes speak to the manager on the behalf of the person with the disability and influence the situation. Be sure all parties know what the owner expects.

FUNDING OPTIONS: The Housing Authority is the primary source of rental subsidies. Please see Local Housing Organizations, Section 2-1, for details about the Housing Authority and their Section 8 program.

B. Renting A House

PROS: A house gives the consumer more space and privacy then renting an apartment. Some houses have yards for relaxing, gardening or caring for a pet.

CONS: A house is more expensive than renting an apartment. The renter may be expected to take care of the yard.

C. Renting An Apartment

PROS: Apartment units are close together and neighbors can sometimes be a source of friendship and support. Renting an apartment is usually less expensive than renting a house and there is usually no yard that needs to be cared for.

CONS: Apartment units often share walls. This means residents need to be aware that neighbors can easily hear loud noises.

D. Renting A Room

PROS: Generally even less expensive than renting an apartment. House mates can sometimes give each other support.

CONS: Owner, leasor and other boarders may have more say as to how they want things to be. Compatibility in lifestyles needs to be explored. For example, smoking or non-smoking? sharing meals or not? loud music or not?

CONSIDERATIONS: When assisting your son or daughter to evaluate a household for the purpose of renting a room, encourage them to be frank about what they don’t like. They should not move into a situation expecting to make changes in the way the current household does things.

3. CO-HOUSING - Co-Housing is a way of creating a community or neighborhood of choice. Together the community will plan a development that will include private units for individuals and families as well as community buildings for things like child care, meeting rooms, or a dining hall.

PROS: You get to be neighbors with people you know well, have worked through the development process with, and with whom you share some basic life values. You can arrange for supports from within your community for child care, attendant care, or just people to stop by from time to time. Since this would be a community of people who know each other, it could also lend itself to the possibility of bartering for services. For example, a person with a disability may be able to do some housecleaning for a neighbor who in return could help them with transportation and scheduling needs. If some individuals in the community have resources to share with those who have less, a few units could be offered more affordably.

CONS: This type of community takes a very long time to develop - easily three years, often more. This is because it takes time for a group of people to become a community with a common vision. They need to meet many times to discuss issues of shared values, visions for what the development might look like, how much it might cost, and what financial resources participants are able to invest. This process can be costly, since land and new development are expensive.

4. CONDOMINIUM OWNERSHIP - Condominiums are complexes where many units are grouped together and usually some of the units share at least one wall with another unit. When a person purchases a condominium, they are purchasing the space within the unit. Usually there are shared facilities such as a swimming pool or a meeting hall in the complex. Each condominium has an association that oversees the maintenance of the exterior parts of the building. Condominium owners pay a fee to the association for this maintenance.

PROS: These units can be cheaper than buying a house. As with a house the unit owner gains equity in it as they pay off the mortgage or as real estate values go up. There is less responsibility for upkeep compared to owning a home.

CONS: A fee is paid to the association for the maintenance and can sometimes be high. If there are shared walls neighbors can hear loud noises.

5. COOPERATIVE OWNERSHIP - A cooperative is similar to a condominium in that there is a cooperative association that owns the building. The building in this case can be an apartment building, a single family home, or condominiums. Individuals share the cost of the structure which entitles them to a unit within the structure.

PROS: Cooperatives tend to be more modest and affordable than condominiums. The cooperative members could provide companionship and support. Cooperative members will have an interest in maintaining the property that they own jointly. Usually the members will make plans and agreements regarding how the maintenance will be carried out.

CONS: Time and energy will be required to work with the cooperative members to decide on issues at the beginning of the project and on going. Issues that would have to be clarified might include how the household will divide up the bills, or how the common property will be cared for.

CONSIDERATIONS: It’s important for a prospective tenant of a cooperative to consider whether s/he enjoys or can tolerate making these types of decisions within a group.

6. HOME OWNERSHIP BY A PERSON WITH A DEVELOPMENTAL DISABILITY - Home ownership is when one or more people own a house and, in most cases, the land on and around that house. To purchase a house one usually needs to have some money up front (called a down payment) and needs a financial institution to loan the rest of the cost of the house (this is called a mortgage loan). Traditionally a person could only get a loan if s/he had a steady job for up to two years and had a good history of paying past bills (called a credit history). This is still usually the case. However, advocates are encouraging lending institutions to make it easier for people with low incomes and on entitlement programs to purchase their own homes.

PROS: When a person owns a house they have control and the freedom to decorate how they want and to live with as many other people or pets as they would like. When the value of the property increases (this happens when the neighboring properties increase in value), then the value of the house increases. This is called gaining equity in a home. A person can also gain equity as they pay off their home loan.

CONS: When a person owns a home, the physical structure needs to be kept up. If you are supporting your son or daughter or friend to own their own home they may also need assistance with the upkeep. Owning a home can be expensive since one must consider utilities, maintenance, taxes, and insurance in addition to the mortgage payments.

CONSIDERATIONS: One aspect of owning a home is paying property taxes. When someone owns a home they help pay for services which are provided in the community such as emergency police or ambulance response or the local library. These and other services are paid for through the property taxes. Another payment to be aware of is the property insurance. When someone purchases a house, the house must be insured against things like fire. When a property is insured, if the house burns down the insurance company will pay for repairs or for the cost of a replacement home. Home owner insurance is required. Without it you cannot get a loan. When possible it is preferable to arrange for the payment of property taxes and insurance on a monthly basis with the mortgage payment. In this way the owner does not have to produce large sums of money once or twice a year. If you are supporting a friend or son or daughter with a developmental disability to own his/her own home, s/he will also need support in deciding how these types of payments are made.

FUNDING OPTIONS - If you or your son or daughter has a low income but brings in enough money to pay for taxes, insurance and a small mortgage the Home Of Your Own program may be able to assist you. Depending on funding availability HOYO may be able to grant down payment assistance as well as technical assistance through out the purchasing process. Please call HOYO at (541) 484-4868.

7. STARTING A NON-PROFIT CORPORATION

PROS: The non-profit would have access to "grant" monies and donations. Can create the "vision."

CONS: Need to attend to fulfilling paperwork requirements of non-profits. Need to create a board of directors.

RESOURCES: Find someone who has done it and look a their 501(c)3 application, Articles of Incorporation and by-laws. Order The Oregon Nonprofit Corporation Handbook published by Technical Assistance for Community Services, 1903 SE Ankeny, Portland, OR 97214. (503) 239-4001.

8. CONSORTIUM MODEL - "Consortiums" are non-profit corporations that clusters of families form for the purpose of meeting their mutual needs.

PROS: Parents can stay really involved in the care of their sons and daughter. Becoming a non-profit corporation enables the group to receive grant funds that are not available to individuals. The consortium model may be especially helpful to families who’s young adults with developmental disabilities need very intensive supports and have no funding for those support services.

CONS: Non-profit consortiums take time and energy to start. Families work closely together on projects which are important to them so they should know and trust each other before embarking on this collaborative commitment.

CONSIDERATIONS: One model that’s been tried is a shared household where families pool their SSI to share a paid support staff. Some non-profits make their non-profit status available to other families as they conceive of their own projects.

RESOURCES: Friendship Homes Family Consortium (FHFC) was formed by a group of families with developmentally disabled young adults, and other concerned members of the community who were looking for methods to provide stable, appropriate long term housing for family members with developmental disabilities. Friendship Homes Family Consortium was incorporated as a nonprofit organization in January 1995.

For the first housing project, FHFC submitted a Community Development Block Grant (HUD) proposal in March 1995. When the grant was awarded, FHFC purchased a split level ranch style house in Gresham to become home for five young adults and a resident caregiver. This house, called Friendship House, required extensive remodeling to adapt it to the residents’ needs.

IN THE FUTURE, FHFC would like to assist other families in organizing into groups with similar needs and in establishing housing for their developmentally disabled family members.

For more information please contact Friendship Homes Family Consortium, 16581 SE Catlyn Woods Dr., Milwaukie, OR 97267. (503) 652-7041.

V. STARTING A HOUSING TASK FORCE

Why start a housing task force? A housing task force can provide a forum for parents and their son or daughter to:

network with others and share needs and resources,
learn about low-income housing agencies and services,
begin partnering with affordable housing providers,
plan to advocate together for housing and services that meet the needs of their families.

How should it be organized? One way is to ask The Arc in your area (see Advocacy, Mediation and Legal Aid, Section 7) to sponsor a task force. The Arc may be willing to provide a location and staff support. Six of The Arcs are already coordinating local housing task forces: The Arcs of Multnomah, Washington, Clackamas, Benton, and Lane County. You may also start a task force without a sponsoring agency.

Parents and their sons/daughters should be the primary participants of the task force. They can then support and educate each other. As families define what their needs and preferences are, they can then ask housing and service professionals to work with them.

What issues should we discuss? Families can start by talking about the needs of their sons and daughters. This often leads to sharing information about resources. It also leads to a realization about how many families share similar needs. As families define what their needs are they can list them. Future meetings may be planned around educating task force participants about resources that meet those needs. Experts can be invited to speak about a wide variety of topics. As parents become clearer about their needs and available resources they can begin to create a community living option for their sons and daughters. Families may decide to work individually or in partnerships with other families. Be sure to provide an opportunity for sons/daughters to discuss their preferences as well.

Who should we invite to speak? Who is invited depends on the specific concerns of families participating in the task force. Here are examples of speakers existing task forces have invited:

• a parent who has created a supportive community living situation for her son or daughter

• a representative from a local Community Development Corporation

• a local non-profit developer

• a representative from the Housing Authority

• a representative from the Vocational Rehabilitation Division

• an expert on Person Centered Planning

These are just a few ideas about who may be invited to speak to your housing taskforce. As you read about housing and support issues in this resource guide, you may get ideas about who to invite to your task force. Look up your county section in the back of this guide (Section 7) to get an initial list of agency names and numbers that may be helpful to you.

Then what? How each family on the task force proceeds will vary greatly. Some families will decide they’re not ready for a life style change yet and they will use what they’ve learned in the future. Other families may decide to partner together to develop a supported shared household. One family may decide to remodel their basement to make it into a studio unit for their son or daughter. Another family may assist their son or daughter to establish an employment situation. Some families may decide that they need to lobby for more services.

Each task force will have various outcomes depending on the needs of the families within the task force.