Chapter 2: Making the Right Housing Choices
Choosing a home is among the most important decisions a person ever makes. Where a person lives often affects his or her relationships with others, involvement in the community, and overall satisfaction with life. It also has an effect on personal finances.
Because housing decisions are extremely important, most people spend a considerable amount of time narrowing down their selection of a home. They may talk to others about the safety of various locations and evaluate potential neighborhoods in terms of proximity to schools, grocery stores, shopping centers, theaters, parks, and places of worship, as well as availability of public transportation. Some people make lists of "must haves" they use when evaluating places to live. For many people, the number of bedrooms and bathrooms, a yard or a driveway, and storage space are most essential. Others may evaluate a potential home in terms of its accessibility for someone who has a disability. Some people prefer small yards (less lawn to mow) and short sidewalks (less snow to shovel).
Advocates of consumer controlled housing recognize that the decision about where a person with a developmental disability will live is very important to that person's quality of life. That decision should not be based on availability of openings in residential facilities or a service provider's determination that a particular location will be convenient. Individuals may need different levels of support and assistance in securing and living in their own homes; however, people with developmental disabilities and their families are usually the best qualified to make decisions about where and in what kind of home they will live.
Most people must consider a number of interacting elements in choosing the house they want to live in. For example, location, economics, structure, size, design, and other factors usually play a role. Of course, each element operates differently. Economic factors impose budgetary limits. Physical needs demand accessibility. The varying availability of publicly financed supports may limit choices to certain localities. Certain imposed limitations exist for everyone but within them people with developmental disabilities should enjoy many possibilities for homes of their own. In weighing the possibilities people may want to think about some of the factors outlined below.
- General Location: In many instances the factors related to the service system that one depends on for support (e.g., residing in a specific county) may affect the choice of location. Some people choose to live relatively close to family and friends because of their important supports. Having the support of a single preferred agency or individual often requires general considerations concerning location. Of course, preferences for urban, suburban, or rural living are important for many individuals. Other considerations are supportive communities, public transportation, available conveniences, etc.
- Neighborhood: People tend to choose neighborhoods that offer specific features of importance to a preferred lifestyle. Many features define neighborhoods, such as community "personalities," inclusiveness/isolation, political and social tolerance/intolerance of diversity, or community activism/conservatism. Neighborhood considerations are also important in different ways to different people; many people are interested in what communities have to offer in the ways of parks and recreation programs, churches, schools, libraries, and so forth. Neighborhood commercial resources, such as stores and restaurants are often important, particularly for persons for whom transportation outside the neighborhood may be difficult and time consuming. So is the neighborhood physical environment important to many people; some want features like lakes, trees, spaces, and quiet whereas others prefer the activity of an urban environment.
- Important Specific Proximities: Many individuals must attend to important specific proximities within a neighborhood. For example, people without personal transportation may wish to be close to grocery stores, community resources that are used on a frequent basis (e.g., a YMCA/YWCA), a preferred café, or to have easy access to public transportation. For persons with physical disabilities or persons who may become disoriented and for those for whom traffic may pose a threat, specific paths of community access may need to be assessed.
- Accessibility: It's obviously important to ensure that the housing and its spaces and appliances are accessible to the users. Physical spaces and appliances need to be easily assessed by the individual with developmental disabilities, family members and others. It's also important to recognize that assistance is often available for accommodations that would make otherwise desirable housing accessible (see Chapter 5).
- Safety: Depending on the individual, within the context of the type of housing and neighborhood selected, the available support, and other factors, attention must be given to whether the housing affords reasonable safety. If there are doubts, modifications (e.g., deadbolts, emergency alert systems), protective arrangements (e.g., a neighbor who is willing to act as a monitor), or other accommodations may be made. However, for most persons with developmental disabilities a relatively conservative perspective on safety is just common sense and may be required by the programs that finance the supportive services.
- Attractiveness: People with developmental disabilities also should be able to live in housing that meets their standards for attractiveness and cleanliness. Much of what is regarded as attractiveness or cleanliness is too individualistic to define specifically, but for most people it means a pleasing physical layout that is freshly painted in preferred colors and is reasonably clean and tidy. One should always carefully assess what it will take to reach and remain at the desired level of attractiveness and cleanliness and who will be responsible for that work. When looking at apartments, inspect the premises for upkeep and talk to other tenants about maintenance; the latter is usually a good indicator of the landlord's likely contribution to maintaining an apartment. When a home is being considered for purchase it's important to carefully assess the work needed to bring and maintain the residence to the desired condition of attractiveness and cleanliness.
- Desired Amenities: People desire different amenities in their housing. Often the absence of a single highly desired feature can substantially lower one's satisfaction. Among the features that have such weight for many people are showers, air conditioning, microwave ovens, washers and dryers, gardens, porches, decks, and balconies. In planning housing, it's important to learn from the person which amenities are important to him or her.
- Single or Multiple Housing Units: Some people view a single detached housing unit as important; for others there are clearly recognized (and sometimes unrecognized) advantages in multiple unit housing. The advantages of each are relatively obvious in dimensions such as privacy, shared space, noise, social contacts and informal monitoring, as well as in the factors of location, neighborhood, and proximity (see above). The availability of single vs. multiple unit housing also varies greatly from place to place, as do housing costs, the possible need for roommates/ housemates, a choice between renting or buying, and other such factors.
Social and Personal Considerations
- Roommates/Housemates: Living with other people can sometimes be difficult and stressful as well as immensely rewarding. A basic principle of consumer controlled housing is that a person should live with whomever he or she wishes. The decision often requires substantial attention and discussion to determine which, how many, and under what conditions, people will share living space. Ideally, when people consider living together they have interpersonal experiences or other indicators of compatibility. It's important that all parties who consider sharing a housing unit become equally involved in considerations of their ability to enjoy and benefit from the experience. It's also important to understand the conditions under which roommates enter an arrangement, how it can be dissolved, and what happens to the housing if it is. Housemates have certain rights in law, as well as the property owner. (See page 8 for more details.)
- Permissibility of Desired Lifestyle: It's important to make sure that reasonable freedom is afforded to individuals to live their desired life-styles. Often, maintaining this freedom requires planning the future with the prospective house/apartment mate. For example, a person may not currently have a pet but might have a strong desire for one in the new home. In this case, buildings not allowing pets should be avoided. Similarly, persons with developmental disabilities who are younger, have active social lives, and enjoy loud music often do not enjoy living in housing primarily designed and administered for elderly people, even though the costs, accessibility, and support features may be desirable.
Housing Expenditures and Benefits
- Affordability: A major factor in any housing decision is the maximum amount of disposable income that is available for housing, and the relative trade-offs of spending at or below that maximum amount. When housing costs and the resources available for housing are separated from service costs, people with developmental disabilities enjoy the dignity of considering options and making choices (e.g., if relatively expensive housing is chosen, relatively less is available for discretionary expenditures or vice versa; if more people live together relatively more housing can be afforded or more resources can be spent on such items as cable TV and furniture). It's important that people receive whatever help they need to understand these options and the many other expenses that are associated with different housing decisions, such as taxes, transportation, utilities, insurance, repairs, likely rental increases, and the like. One option is to meet with a home-ownership counselor. For more information about home-ownership counselors, call Arc Minnesota or the Home Ownership Center (see Chapter 9 for contact information.)
- Stability/Flexibility: A primary decision in housing selection is whether to rent or buy. In addition to the obvious financial considerations, the relative desire and/or need for stability or flexibility is of primary importance. If one or more persons commit themselves to a long-term stay in a home, purchasing that home may be a wise decision. On the other hand, if there is uncertainty about the likely length of stay, then the flexibility of renting has distinct advantages. For persons who do not have access to personal transportation, purchasing a home can tie one to a particular neighborhood and may limit access to new job opportunities and social involvements. As a rule, stability is relatively more important if a person has a well-developed social network in a neighborhood.
- Investment/Risk Taking: In addition to providing shelter, home ownership is also an investment. Just how good an investment a given house is will vary with time and location. Some houses may appreciate in value much faster than the inflation rate, only to slow down when the area economy stabilizes or declines. Other houses located in a declining neighborhood may actually lose value. Still, most carefully purchased homes do appreciate and build equity for their owners. Assuming that real estate prices will not deflate and that housing upkeep is not a significant additional cost, housing purchases tend to develop enough equity over a five-year period or longer to cover the purchasing or selling costs of the house. But it's important to keep in mind that home ownership also involves risks (deflation, repair expenses, tax increases, negative changes in neighborhood security, etc.). If the decision is made to exert more housing control by purchasing a property, who will ultimately be responsible for those risks? The answer is important.
- Financial History: Many people with developmental disabilities are limited in the housing market as either renters or owners by the absence of a solid financial history. One's credit history is a significant consideration in decisions by a landlord about a person's desirability as a tenant or by a bank about one's dependability as a mortgage borrower. It's often very helpful in renting or buying a first home if persons with developmental disabilities have been assisted and supported in establishing a financial and credit history. This can be done through checking accounts, secured credit cards, and other recorded financial activities. It's also important that negative financial or credit flags be identified, addressed, and, if possible, removed from a person's financial records. If there are concerns, a credit reporting agency can provide such a history. Such agencies can be found under "credit reporting agencies" in the yellow pages of the telephone book or on the Internet.
To Own or Rent: Relative Benefits
Deciding between home ownership or rental is a major financial decision in which many of the factors above are relevant. Some of the benefits that should be considered about either owning or renting a home are summarized in the following sections.
Control of Exterior and Interior Design: Owners have total control over the exterior and interior design of homes. However, in condominiums and town houses, the governing associations may have certain policies relating to decorations (e.g., no flamingos in yards), paint jobs (no purple houses), use of balconies (no laundry lines), to which owners must abide. For renters, changes in exterior and interior design are controlled by a landlord. The landlord imposes limits on changes and a renter is ill-advised to invest his or her resources in improvements that he or she cannot move at the end of a lease and readily adapt to a new home.
Control of Activities: Owners generally have control over activities in their homes within limits of the law and the rules of any cooperative, condominium, or similar housing collective. Renters may enjoy more freedom in their activities than in other residential settings - but landlords typically list rules in their contracts (e.g., no pets or waterbeds) that should be monitored carefully. It's recommend that specific questions be asked about any such rules and their interpretations.
Stability of Residence: Owners have a home for as long as they choose to remain in it and are able to maintain mortgage and tax payments. Renters' assurance of stability is usually dictated by a contract that permits the landlord to terminate the housing at the contract's completion or for contract violations. In practice, however, landlords value the stability of "good" renters.
Stability of Payments: Owners have relatively stable long-term housing costs that vary primarily with changes in the costs of mortgages, taxes, insurance, utilities, and repairs. Renters generally can expect housing costs to go up steadily with rental increases compounding the tax, insurance, and utility increases faced by owners.
Equity: Over time, owners establish cash value in their homes which can be used as collateral to borrow money for other items, realized at the sale of the house, used as an income stream through a reverse mortgage, or transferred tax-free to the purchase of a new home. Renters acquire no equity but do not face the cash loss of an owner if a home is sold before sufficient equity has been built up to cover the costs of buying and selling.
Unexpected Costs: Owners must be ready to face unexpected, significant, and unavoidable expenditures for the repair or replacement of major appliances; internal heating, cooling and plumbing systems; and structural aspects of the property (roof, sidewalk, etc.). Renters are generally removed from major unexpected costs for repairs and replacements; such costs usually are pro-rated among the tenants and added as part of the individual's rent.
Entry Costs for Housing: Owners often face significant costs in securing a home loan. These include down payment, loan origination fees, and other costs; they generally represent two to ten percent or more of the price of the house. Renters face costs of entry into a property but generally they are far less than those of home buyers. Frequently, landlords require first and last months' rent and a deposit equal to one month's rent before an individual moves into an apartment.
Flexibility to Move: Owners should be aware that entering a contract to buy substantially limits their flexibility. Generally, home buyers are forewarned against buying homes they will live in for less than four or five years unless they can afford to accept a significant financial loss in the total cost of buying and selling the property. Renters have much greater flexibility than owners. The degree of flexibility is stipulated by the rental contract. While most contracts are annual, shorter contracts and breaking a contract often can be negotiated at a premium.
Property Upkeep: Owners generally are responsible for maintaining the exterior of the house and the land around it (notably the lawn and sidewalks). This responsibility can represent significant work for individuals and families or significant costs if the work is done by others. Renters are usually not responsible for maintaining the exterior of a house and its surrounding property, except for yard care and snow removal. Generally, when they do such maintenance, the materials and equipment are provided by the landlord and some form of discount on rent is arranged in return.
Housing and Lifestyle Planning
The success of consumer controlled housing arrangements rests heavily on good planning of both housing and lifestyle. There is no substitute. As noted earlier, people who wish to develop optimal housing arrangements must consider many factors and options. This guidebook provides a start; further consultation with consumers, family members, local housing experts, county officials, service providers, and Arc chapters add to the possibilities. The involvement of local officials - especially the person's case manager - is essential to assure the availability of the supportive services and programs necessary for the person to live in his or her own home.
Because of multi-agency involvement, and the complexity and uniqueness of each person's desired housing and lifestyle, careful person-centered planning is absolutely essential. Certain features of successful housing and lifestyle plans are described in this section, but much more detail is available on specific planning approaches from the resources identified in Chapter 9. Given that the concepts of person-centered planning and consumer controlled housing are fairly new, neither the person with a developmental disability nor his or her parents or advocates should expect everyone whom they consult, including the case manager and county board, to be knowledgeable or even supportive of the ideas. Those who plan must have a clear vision of what they want and be prepared to educate "experts" to help them to make the housing vision a reality.
Elements of Effective Plans
Effective housing and lifestyle plans for consumer controlled housing contain certain essential elements:
- The plan is built around the needs and desires of the person who will reside in the home. All needed supports are provided, including program services and services related to the upkeep of the residence. The person who will benefit from the plan is involved in its development to the greatest extent possible, and his or her choices of location, structure, housemates, etc., are honored or renegotiated, based on specifically identified constraints.
- The plan is based on a realistic assessment of the current and potential resources available to the person, including income, support systems (formal and informal), specialized and generic services, and available resources for financing what the person needs and wants in life. The plan has been developed with the involvement of all the people whose commitments are essential to carrying out the plan. The people include parents, siblings, other relatives, friends, neighbors, case managers, service providers, real estate professionals, etc., as well as the person with a developmental disability.
- The elements of the plan are coordinated. The programmatic aspects are integrated and the effects of resources on program eligibility are taken into account.
- The plan is kept flexible to meet the changing needs and desires of the consumer. In addition to service provision and housing payments, day-to-day expenses and responsibilities are also planned for, such as payment of bills, tax liability, insurance coverage, building upkeep, unexpected losses, etc.
- The plan has a long-term focus - not in terms of locking the person into a single view of the future but in terms of attending to the long-range aspirations and basic needs of the consumer.
- Lifestyle considerations are the primary focus of attention. The focus of consumer controlled housing should always be the ability to contribute to a desired lifestyle; the housing is not an end in itself. Controlling one's own housing does not automatically guarantee opportunities for enjoyable social contacts and community participation. For example, large-scale housing developments designed solely for persons with developmental disabilities may hinder residents from being active in the larger community. In planning for consumer owned housing arrangements, efforts should be made to assure integration opportunities through such elements as location, choice of housemates and neighbors, and access to community work as well as to recreational and other programs.
Person-Centered Lifestyle Planning Approaches
People who plan consumer controlled housing arrangements are likely to find that certain desired results are often difficult to attain or even may conflict with the plan (e.g., in areas of safety and independence, affordability, and personal preference). Such instances call for creativity, ingenuity, persistence, and compromise. In many situations, the "system" isn't ready to accommodate the need, whether it's an affordable mortgage, an appropriate service program, or eligibility for a funding stream. Achieving workable solutions is done most effectively through group effort. People seeking to develop and implement consumer controlled housing and lifestyle plans should initiate contact with their case manager early and be prepared to educate members of the service system at all levels. Networking with families, consumers and other individuals with similar interests, and working with established advocacy groups (e.g., Arc Minnesota and local Arc chapters), are ways to shape the system and to increase its capacity to assist people in securing homes of their own.
Before people begin to think about where they want to live, they should think carefully about how they want to live.
There are no magical approaches to doing person-centered planning right. That ultimately depends on the care, commitment and creativity of those involved. But for people seeking a structure for person-centered planning, well-developed, successfully tested methods do exist.
Over the past few years, a number of person-centered planning processes have been developed and used successfully to assist people to define and realize the lifestyles they want for themselves. But for many people it's only after the elements of the desired lifestyle have been defined that it makes sense to think about how housing might contribute to that desired lifestyle.
The McGill Action Planning System (MAPS), Personal Futures Planning (PFP), Life-Style Planning (LSP), and Essential Lifestyle Planning (ELP) structure the processes of information gathering, brainstorming, and consumer-centered group processes which are used to identify and plan lifestyles and to enhance the quality of life for individuals with developmental disabilities. The MAPS, PFP, LSP, and ELP processes all begin with the recruitment and preparation of a small group of family members, friends, and significant staff people to work together with the person with a developmental disability to develop the vision and means of enhancing the individual's lifestyle in ways that are pleasing to him or her. Typically, the initial phases of person-centered planning involve the contributions of each participant to define his or her special knowledge and understanding of the focus individual. These contributions may occur as part of a review of the individual's "life history" through the eyes of the group members and those of the individual, or it may involve other strategies to identify what is important to a high-quality lifestyle for the individual (e.g., gathering information about the individual's current relationships, where the individual likes to spend time, the individual's preferences and interests, the individual's abilities and positive characteristics, and so forth). Participants also concentrate on how the individual can contribute to others, and on the assistance and/or accommodations the individual may need from others.
Creating a "vision" or "dream" is often the next step. This must be accomplished before people can determine how to create opportunities for the desired lifestyle. This vision is a highly personalized view of what the individual and committed family and friends want for him or her. At times, these visions are comprehensive and encompass almost every aspect of the person's life. In other cases, they are quite simple and may consist of nothing more than the individual's desire to have a home of his or her own and/or to establish one close friendship.
During this phase of person-centered planning, some facilitators also encourage planning groups to initiate discussion of the "worst nightmares" that might occur to the individual. This process deals directly with the anxieties that many participants may have regarding the future of the person with developmental disabilities if he or she has an opportunity to live out the dream of a consumer controlled home. Housing issues often come up in this stage because home is such a central part of one's lifestyle. Identifying worst-case scenarios often helps participants to think through economic, social, and safety issues associated with different residential situations (e.g., an individual may move to a safe neighborhood but be relatively isolated from old and valued friends and/or have little money left for favorite activities). It often results in the group being able to focus planning to minimize the chance of this "worst-case scenario" happening.
The initial phases of person-centered planning are often done in sessions that last three hours or longer. Upon completion, the facilitator, the subject of the planning, and members of the planning group should have an in-depth knowledge of the subject, including his or her personal goals and vision for a community lifestyle. They should also have an understanding of the essential aspects of the person's lifestyle (called "non-negotiables" in ELP). The task then shifts to engaging the group in the development of a plan of action that will make the focus person's vision a reality. Developing an "action plan" is the beginning of the intervention phase of person-centered inclusion planning; it involves the group in deciding what can be done to support the person's lifestyle through housing, relationships, work, community participation, formal and informal supports, and other means.
Throughout the planning and implementation process, the group facilitator and other participants continue to meet, though not necessarily as a complete group, to insure that the lifestyle plan developed is effectively carried out and that changes are made when necessary. (Changes are always needed.) Sometimes "subgroups" are formed to take responsibility for overseeing the implementation of particular aspects of the more comprehensive intervention plan (e.g., locating, financing, and maintaining the individual's home). These persons communicate with each other on a regular basis to flesh out the various aspects of the intervention plan. The intervention phase of person-centered planning continues until the individual and the group decide that the vision of the lifestyle, which was created at initial meetings, has been achieved and can be sustained.
By its very nature, the process of person-centered planning is flexible. The person-centered planning group may vary in size and membership in accordance with current needs and goals. New people may be recruited and invited in as they or the group express an interest in participating. The goals and needs of the individual may change as goals are attained and skills, experience, and a sense of empowerment grow. The group may formally dissolve after a period of time although participants may continue independent involvement in the individual's life. Nevertheless, groups often re-form to assist the focus person when problems, new aspirations for the future, or periods of transition arise.
Person-centered planning has been a valuable tool for defining the essential aspects of a satisfying lifestyle for an individual and for planning the means to achieve that lifestyle. Because a home is such a basic part of one's lifestyle, person-centered planning for an adolescent or adult should not fail to attend to the questions of how, where, and with whom the person will live. Person-centered planning is an excellent process for addressing such questions within the broader context of all the many things the individual wants and needs in life. Chapter 9 lists some excellent resources on the different models of person-centered planning (especially Personal Futures Planning developed and published by the Metropolitan Council).
Circles of Support
In viewing a home of one's own as a means to realize one's desired lifestyle, lifestyle and associated housing plans are extremely important in identifying and putting in place the key elements for an individual's desired home and life in a community. But few people's lives ever stick to a plan. Often, people change their minds about how they want to live, requiring changes in the best of plans. Because change and new challenges are predictable among people who are gaining control of their homes and lifestyles, it's important that they be surrounded by others who will monitor and support them on an ongoing basis.
Such people are sometimes referred to as "circles of support," and typically include family members and friends, volunteer advocates, staff members who are particularly close to the individual, supportive case managers, and others. A circle of support is defined less by role than by a common commitment to assist a person to live life on his or her own terms.
Circles of support may be formalized. They may be defined as a group of people come together at set periods of time to develop and monitor an individual's service plan (e.g., as in California's Community Supported Living Arrangements program); or they may be less formally defined, that is, they may include all the people who contribute to the individual's achievement of a desired lifestyle. Most circles of support fall somewhere between formal official roles and loose collections of the individual's allies. In general, circles of support are groups of people who work together to support a person in defining and achieving the lifestyle he or she desires. People in the circle share "knowledge" (often different) of the individual, a deep concern for him or her, a strong desire to support the individual in realizing his or her dreams, and a willingness to commit personal time and energy to help.
It's often through the interaction of the person with disabilities and the circle of support in the planning processes just described that these dreams of a compatible lifestyle are defined and plans for achieving them are developed. Unlike the members of traditional interdisciplinary assessment teams, members of the circle of support see their role as ongoing, not periodic, and as participatory, not advisory. Members of the individual's circle gather regularly around the person with disabilities with the explicit and singular purpose of playing a significant role in assisting the person to achieve his or her dreams. Usually, circles of support employ skilled facilitators to assist circle members in solving the inevitable problems.
Keys to Circles of Support
According to Pat Beeman and George Ducharme (1988), there are a number of keys to developing circles of support:
- The focus person and family must want change. Developing a futures plan and forming a network of support is not for everyone. The focus person and the family must want to be part of this process. They must want changes to occur and be willing to help make those changes happen.
- Focus on an individual to generate a vision. A vision of what the individual desires will help to determine the structure and strategies of the plan. Knowing the person's vision will help to keep everyone in the network on track when barriers get in the way. When creating a vision, listen to the desires and goals of the focus person and build on what the person says.
- Plan for success. Start small; don't take on too much at any one time. This rule should ensure some early successes and movement toward the more difficult steps that may be encountered along the way to the comprehensive vision. The quality of the achievement is more important than the quality of the goal. Don't expect things to happen overnight. Good things take time to develop.
- Empower people to develop their own visions. Promote confidence and support achievement. Avoid telling the focus person what is "right" or what is "wrong" about the vision. Everyone has a right to make choices about his or her life and to make mistakes. "Mistakes" are not failures but opportunities to build on valuable experience. Help the individual to focus on his or her strengths and abilities, and on how they can contribute to making his or her vision become a reality. Describe barriers realistically: don't exaggerate them because this might discourage group members. Consider ways the community can help remove those barriers and bring the vision to life. Remember that empowerment starts from the inside out not from the outside in. Short circuiting the empowerment process for the focus person may be counterproductive.
- Be inclusive and supportive of interested friends, family, and others who care about the person. Encourage the focus person or the family to invite family members, friends, and neighbors to become part of the support network. Look for the abilities, energies, and resources of group members. View different ideas as ways to discover new things and to see new solutions.
- Identify members of the group who are active in community life to help make connections within the community. Seek out group members who are actively engaged with various associations in the community and consider how those associations can help to remove barriers to realization of the focus person's vision.
- Look outside for connections to increase community involvement. Some connections may be made through relatives and friends. Where do they work? What clubs do they belong to? What churches do they go to? How might these friends and relatives help the individual to begin to get involved? Find out who are other members of these clubs and associations. Do they or their families have needs or interests that could be matched with the focus person's?
Beeman, P. & Ducharme, G. (1988). One candle power: Building bridges into community life. Available from Northspring Consulting, Box 93, North Granby, CT 06060.
Beth Mount, an author of the booklet It's Never Too Early, It's Never Too Late, has also summarized some features of circles of support which make them better able to contribute to people who are trying to realize their dreams:
- A skilled facilitator is available to the circle.
- All the circle members, including the focus person, attend to capacities and opportunities rather than disabilities, deficiencies, and barriers.
- Circle members are in position to find out about new possibilities and new ways to organize the assistance the focus person needs.
- At least one circle member has a strong commitment to act vigorously on the focus person's behalf.
- Some circle of support members are active in organizations and coalitions that are focused on changing unjust or ineffective policies.
- Some circle of support members develop influence with people who make policy and administer human service programs that affect the quality of the focus person's life.
- At least one human-service program relied upon by the focus person has an explicit commitment to improving its ability to support people's full participation in community life.
Mount, B. and Zwerink, K. It's Never Too Early, It's Never Too Late: A Booklet About Personal Futures Planning. Available from the Metropolitan Council, St. Paul, 651-602-1000.
Thinking About Affordability
The housing options available to people in the United States are largely a function their of relative wealth. For people with substantial incomes, few financial considerations prevent them from making housing decisions on a straight-forward assessment of how the housing meets their needs and preferences. For people with limited incomes, just the opposite is true. Housing decisions must be based on simultaneous assessment of financial considerations and personal preferences and needs. There are a number of areas people should explore in weighing affordability and achieving one's dream home; remember, however, that few people are able to obtain everything they desire in housing.
The Basic Budget: How Much is Available for Housing?
A basic budget is an important foundation for considering how much money one can spend for housing. A budget helps to identify all the essential things in one's life that cost money. It helps one to understand how spending more or less for some things may make more or less money available for others. Because housing takes so much of a person's total budget and because there are so many ways to spend and save on housing, housing is a very important and often the largest part of a person's budget. How much one decides to spend on housing, consequently, has a major influence on the other things one can do.
The basic budget begins with the present monthly resources and the detailing of one's essentials in housing and lifestyle. Then one can determine how much money one has for housing and the minimum amount of the remaining money that can be spent on the remaining essentials. Things to consider include:
- What is the individual's total current income that is available for housing (e.g., SSI/SSDI/MSA, work income, family contributions, etc.)?
- What are the supplements for utilities, food, transportation, etc. that the person now has or has guaranteed access to (e.g., food stamps, low-income heat share, reduced rate bus passes, etc.)?
- What does the person's credit history and/or rental history look like? How will the strengths and weaknesses of these affect rental or mortgage limits?
- What are the individual's support needs and how will they be provided by the services system (e.g., personal assistance, medical services)? What parts of an individual's life needs can be provided or supplemented by family and friends to save resources for other uses (e.g., family-provided transportation, personal assistance on weekends)?
Living With Other People
Living with other people is one of the most sensitive issues in housing for persons with disabilities. Part of the reason is that the goal is often to create opportunities that are different from the dominant congregate care models. Housing is such a substantial cost to people with limited incomes, however, it's hard to avoid considering the economic benefits of house sharing. Indeed, house sharing is evident all through our society as single persons and small households with low (and often middle) incomes join each other to afford to live in the neighborhoods they want.
Compatibility among roommates was discussed earlier. In thinking about roommates as an aspect of affordability, finding ways to live with other people is often as much an issue of household and support design as it is of compatibility. It often requires considerable exploration of individual perspectives. Some people who say they do not want to live with other people mean that they do not want to live with other people who have developmental disabilities, but a non-disabled roommate would be acceptable, even enjoyable. Creativity in exploring ways to share housing costs without violating an individual's essential requirements for housing is often a major factor in helping a consumer to realize his or her preferred lifestyle within the resources available.
Things to consider include:
- What primary considerations underlie the person's expressed desires for housing arrangements and the possibilities for living with others (e.g., avoiding group home regimentation, not being identified as have mental retardation, being able to choose and cook one's own food)? What alternatives can be shown to the person with developmental disabilities that address these considerations?
- What are some of the ways that can be used to keep both the housing and support needs of the individual within affordable ranges (e.g., live-in roommates who provide some supports and/or emergency assistance, shared housing to which the person with developmental disabilities makes specifically defined, necessary contributions)?
Resources and Available Assistance
Many people have access to resources that are not part of their basic budget. Indeed many people need access to resources beyond their basic budget to realize the lifestyle they want to live. Basic entitlements (SSI/Medicaid) or disability insurance benefits (SSDI/Medicare) are usually accessed by eligible people, but not always. Section 8 and state and local rental assistance programs typically have long waiting lists that discourage many people from applying, but even if there is a two to three year wait for a benefit it's still worth tens of thousands of dollars over one's lifetime. Food stamps are another benefit that is often not obtained even though worth thousands of dollars. Other public benefits like subsidized public transportation and public food shelves also are available for many communities. The potential for increased income through work for many people is substantial if they are properly supported.
Public benefits are often added to by many families, friends, and civic organizations. Some families and friends may prefer to subsidize people's lives in specific ways, such as paying for cable television for Christmas, buying clothing to free more money for housing, and so forth. Civic and advocacy organizations often identify specific needs of people which are related to their homes and desired lifestyles and then help to locate benefactors (known or unknown) to fulfill to the person's need.
Things to consider include:
- What opportunities can be developed or expanded to increase the individual's earned income?
- What assistance and resources, available from the individual's family and friends, can help to obtain essential and desired services or items? Can available assistance free resources for other essentials or desirables?
- What civic and advocacy organizations can offer assistance, resources, or goods (e.g., food or furniture) to individuals with developmental disabilities to help them live the lifestyle they desire?
- What primary public income, medical assistance, other programs, cash and service resources, and subsidies are available to the person? How well have they been identified and used to maximize the individual's resources?
Living Within a Budget
One of the major challenges to having a home of one's own is staying on a budget after the home is established. There are always new goods and services to buy. Getting to know one's neighborhood may mean finding new ways to spend money in it. Yet living on a budget is also an experience that exemplifies control over one's life and resources. With that control comes the responsibility to manage one's own resources. For people to live on a budget they must know as much as they can understand about where their money comes from and where it goes. They need to have a sense of stable income and core expenditures to provide the basis for making financial decisions. The decisions may range from whether to save or spend money that's left over to deciding what spending to reduce to balance a budget or increase savings.
Things to consider include:
- What are the monthly sources of income: a) Social Security Benefits/Minnesota supplement; b) wages earned; c) rent and other subsides (Section 8, food stamps); d) other income, including set monthly (budgetable) gifts; e) payments, from housemates, for garage rental, etc.?
- What are the basic monthly expenses: a) rent/mortgage (including taxes); b) utilities (gas, electricity, water, sewer); c) telephone (basic, long distance); d) insurance; e) repairs, replacements and maintenance; f) other home-related "essentials" such as cable TV, transportation to work, etc.?
- What is the difference between the monthly sources of income and the basic monthly expenses? Include the needed set-aside amounts for maintenance, repairs, and equipment.
- Is the difference enough for satisfactory involvement in all other desired activities.
- Are strategies used to increase the resources for other desired involvements (e.g., clipping advertising coupons, buying monthly bus passes)?
Meeting Day-to-Day Living Expenses
Whether they own or rent, people need a dependable source of income to meet mortgage, taxes, insurance, upkeep, co-op dues, rent, food, clothing, and other such living expenses. Some of the major funding sources used by adults who have developmental disabilities and are living in their own homes follow:
Supplemental Security Income (SSI), Minnesota Supplemental Aid (MSA), and Group Residential Housing (GRH). SSI, a federal program of the Social Security Administration, and MSA, a state-funded program, provide monthly payments to qualifying persons for food, shelter, utilities, personal needs, and other basic necessities. MSA payments supplement SSI payments for those recipients whose SSI grant is below state standards. On January 1, 2000, $512 was the maximum monthly SSI grant award and $621 was the maximum monthly MSA grant. (Cost-of-living adjustments are added annually for inflation.) The amount of the grant is determined by the county of residence. SSI/MSA are applied for at the county social services office. It's important to note that SSI and MSA grants are used for living expenses only, not for program services. Funding for program services is provided through other programs (see Chapter 4). If you choose to have the home operate as a licensed program, the people living there may be eligible to receive a Group Residential Housing (GRH) supplemental room and board rate. This rate is in addition to the MSA rate, but is paid directly to the provider of the support services. The GRH rate is negotiated between the county and provider. GRH can only be used for living expenses. Rates will vary by county.
Social Security Disability Insurance (SSDI). SSDI is a social insurance program (in contrast to SSI, which is a social entitlement program) administered by the Social Security Administration. It provides assistance to eligible persons who are disabled. Persons with severe disabilities may qualify for "childhood disability benefits" under this program after they reach their eighteenth birthdays, if they are the sons or daughters of workers entitled to Social Security retirement benefits or disability benefits, or of insured workers who have died. In some cases, persons can qualify on the record of a grandparent. To be eligible for childhood disability benefits, a person must meet the following federal definition: "Disability... [is] the existence of a medically determinable physical or mental impairment or impairments expected to result in death or which have lasted, or can be expected to last, for a continuous period of not less than twelve months and of a level deemed sufficient to prevent an individual from engaging in any gainful activity." This disability must have had its onset before the age of twenty-two years. Benefits are paid monthly directly to the beneficiary, by direct deposit to a financial organization (e.g., bank, credit union, or trust) or to a representative payee. The benefit amount is determined by the amount of Social Security taxes paid in by the insured worker. Application is made through local Social Security Administration offices.
Food Stamps. The federal food stamp program makes food available to lower income persons at reduced prices. Persons may get food stamps if they meet program income guidelines and provide or apply for a Social Security number. Food stamps may be used to purchase basic food items at most grocery stores. Applications are made at the county social services office.
Earned Income. Of course, income derived from employment is an important source of funds for the living expenses of many, if not most, persons with developmental disabilities who live in their own homes. Arguably, living in a home purchased, at least in part, with income earned through employment increases the owners' pride and satisfaction in having homes of their own. Recent changes in state and federal laws make it easier for persons with developmental disabilities to keep earned income while remaining eligible for long-term support services.
Trust Funds. Persons with developmental disabilities who live in their own homes may be helped to meet living expenses through trust funds set aside by their parents or other family members. These funds provide a regular source of supplemental income for the resident but are protected as assets in the determination of eligibility for governmental programs. Such trusts can be set up to provide payments prior to or after the parents' death. (For further information on trusts, see Chapter 7.)
Worksheets for Choosing a Home
When a person is choosing a home, a specific checklist of what is important to the individual is very helpful. Appendix A contains a number of worksheets that can help people choose homes they will like. But these are just examples of lists that can be used to help people decide on a neighborhood and home. It's important to make sure each individual has a personalized "checklist" that truly reflects his or her specific needs and desires in housing
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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.