LOTS Housing
Strategies for Home Modification
Just as Virginia Woolf wrote in A Room of One’s Own (1929), "a woman must have money and a room of her own if she is going to write;" disabled adults must also have a room of their own in order to actively contribute and participate in their communities. As the disease progresses adequate and appropriate housing becomes more of a challenge.
Living in one's own home, for many affected adults, requires supports that are designed for and with the person and flexible enough to respond to the person's changing needs and wishes. Thinking about support in this way means that people with complex needs or severe disabilities can also have homes of their own.
The amount and types of support will vary greatly from person to person. For some people, support may simply mean that family, friends or neighbors will check in on the person, with or without pay. This is similar to the kinds of support we all need. For others, the supports might include a mixture of services and informal assistance. One person might have a paid roommate, personal care attendants who come in, medical and therapeutic oversight and services, family members, friends, and a service coordinator who works with the person to ensure that everything is coordinated and the paper work is completed. Another might have some technological aids such as emergency call system, and tape player for reminders; along with a staff member who lives very close by. The combination and types of support that might be designed are limited only by the imagination.
As is true for the financing of housing, many support services can be funded if people are creative in making use of or modifying what already exists and, if needed, in developing new types of financing.
Some potential sources of funding include:
- A person's Medicaid (which might pay, depending on the state, for personal care attendants, case management, therapeutic services, medical care, technological and physical aids, and other services).
- The state's Medicaid Home and Community-Based Services waiver (most states have such a waiver, administered either through their Department of Social Services or their Developmental Disabilities office), which could pay for a whole range of support services, including service coordination/case management. In eight states (California, Colorado, Florida, Illinois, Maryland, Michigan, Rhode Island, and Wisconsin), Medicaid has approved a Community and Supported Living Arrangements waiver, which can fund an even broader range of support services.
- State funds for residential services, which might now be used to finance group homes and apartment programs but which could pay for individualized and flexible supports for a person to live in his or her own home.
- Independent living funds through Vocational Rehabilitation.
- Private funding sources, including money contributed by local civic groups, the person or the family.
- Other funds administered by the Developmental Disabilities or Social Services offices in a state.
Assistive technology supports can be financed through a variety of sources. Further, 31 states have special assistive technology projects. For more information, consult your state's Developmental Disabilities Planning Council and the resources listed at the end of this report.
As defined by the US Department of Health and Human Services developmental disabilities are severe, life-long disabilities attributable to mental and/or physical impairments, manifested before age 22. Developmental disabilities result in substantial limitations in three or more areas of major life activities:
- capacity for independent living
- economic self-sufficiency
- learning
- mobility
- receptive and expressive language
- self-care
- self-direction
While much still remains to be done to develop funding for support services so that people can live in homes of their own, a start has been made. Organizations in several states have worked to redirect the existing funding streams, to change regulations, and to identify and remove state and local barriers so that individualized and flexible supports could be adequately financed for each person involved. Around the country, more and more organizations of parents and people with disabilities and provider agencies are actively involved in efforts to develop funding for supports.
Strategies for Home Modification
An occupational therapist is often the professional who can best advise on strategies to modify the household and/or workplace to accommodate the special needs of a person with LOTS. For example, an OT could advise on the appropriate width of doorways for someone using a wheelchair, on kitchen modifications for someone who needs to work from a sitting position, and on the optimal placement of railings or grab bars to maximize safety.
Lifts and ramps are expensive but can help a person remain in their home because ramps will get a person in the home while lifts provide upward mobility. It is important to look into the future and consider the progression of LOTS when investing in costly in home modifications like lifts and ramps.
There are two basic types of lifts – a user transfers in and out, leaving their wheels or walker behind or a larger lift requiring more power that lifts the person in their chair up the stairs. If you are considering the larger lift be sure to check what you and your equipment weight together against the lift’s weight limit. A reliable medical equipment vendor can ensure that any lift, interior or exterior, meets the safety codes established by the American Society of Mechanical Engineers.
You’ll probably obtain a ramp from a local builder, not a medical equipment vendor. Whether designed for your specific space or prefabricated, your ramp should meet regulations for the proper slope. The formula calls for one unit of height to 12 units of distance. This is a more gradual slope—making for a longer ramp—than most people expect. Anything steeper can be dangerous and almost impossible to use. You or your builder should also check any neighborhood covenants before building an exterior ramp. To help defray costs, ask if a local service organization, school carpentry class, or carpenter’s union would build your ramp as a service project.
The Minnesota Ramp Project offers a modular design for ramps or low steps that can be built either on or off your site. The comprehensive how-to plan comes with tips on using volunteer builders or finding financing. It can be printed free from Wheel Chair Ramp or purchased from the Metropolitan Center for Independent Living (call 651-646-8342 or write to MCIL, 1600 University Ave. West, #16, St. Paul, MN 55104-3825).
Finally, a well-built ramp doesn’t have to mar your house or ruin its value. To address the aesthetic along with the practical side of ramps, take a look at books such as Gracious Spaces: Universal Interiors by Design by Irma Dobkin and Mary Jo Peterson (1999; McGraw-Hill) or the Editors of Creative Publishing International’s 2003 The Accessible Home: Updating Your Home for Changing Physical Needs.
Cost of a ramp depends on how long the ramp has to be to get into your home. Please carefully review the design recommendations and safety considerations with an occupational therapist before deciding on the final layout of your ramp or steps. Once you have determined the layout, you can figure out how much lumber and hardware will be needed. Lumber yards and building supply stores can then give you an estimate. It is important to work closely the people who will install the ramps or steps to insure you obtain a structure that is safe and meets your needs as well as possible. Remember who the user will be, it won't be the builder.
The following are several federal and state programs that can provide assistance. Most have eligibility requirements and it is important to make sure all of the required paperwork has been completed before ramp or step installation is started.
Department of Housing and Urban Development (HUD) Community Development Block Grant Program (CDBG) and Home Investment Partnership Program (HOME) Their web page has a large amount of information available. City or County Community Development Agencies or Housing Redevelopment Authorities may manage CDBG and HOME programs in your area or they will know who does. These programs are excellent resources for moderate and low income individuals and for programs that want to provide home modification assistance to people in their communities.
The U.S Department of Agriculture Rural Development has Section 504 Loans and Grants that can be used for accessibility modifications and to repair homes. The objective of the program is "to help very low income owner occupants of modest single family homes in rural areas repair those homes." State office location information is at www.rurdev.usda.gov/recd_map.html
State Housing Finance Agencies, Authorities or Corporations. These programs are called different things in different states. About one fourth of these state agencies have programs that provide assistance for access modifications to single family homes.
Home and Community-Based Waiver Programs administered by county medical assistance or services programs may pay for modifications for those who are eligible. Check with your county about eligibility requirements.
The State Vocational Rehabilitation Program may assist eligible individuals with home accessibility modifications, if the modifications are needed for getting and maintaining employment.
Building contractors can usually build ramps and steps, but do not assume they are familiar with proper access design. It is important to communicate your needs and wishes to the builder and it is appropriate to give them the information in the design chapter of the "How to Build Ramps” manual.
Community service organizations can also use the plans in "How to Build Ramps" to install ramps. There are many groups that may volunteer to build ramps and steps for people. Some of them are:
• Ambucs
• Connect America movement founded by Points of Light Foundation
• Lions
Church organizations, colleges, vocational schools and high schools may have community service programs that could provide volunteers, as well. Lumber yards and building supply stores can be approached for donations of lumber and supplies.
Building your own ramp or stairs can be a choice if 3 or 4 people with basic carpentry skills are available. The plans contained in "How to Build Ramps" can be used by any one with basic skills. A 30 minute video, "Tips for Building Modular Ramps and Steps" that demonstrates many of the building techniques in the manual is available from the Wheel Chair Ramp.
Final Note: It is common for a combination of resources to be used to get ramps and steps installed. Many programs have limited funds available and may be able to offer only partial assistance. Working with more than one agency or organization is often necessary in order to obtain a ramp or steps. Persistence is one of the best tools available for finding the resources needed to get a ramp or steps installed.