Office on Disability

Richard Duncan responded: There were several things mentioned in the presentation about challenges associated with living in the home and having a disability. The focus was mainly on how to redesign homes as well as the merits of designing homes from the ground up. However, not as much has been done to address cognitive issues and the special challenges they present in universal design. There is a need for more research in this area.

Response: There are several things that could be done to improve designs for persons with visual disabilities. When side lights next to doors cannot be included, new products like peepholes could be mounted to provide larger views than standard peepholes. This is also a matter of control or home automation. For example the ideal home would have integrated systems for communication, electronics and other vital functions.In this case, a simple video camera could be used to monitor visitors at the front door.

Response: The Center for Universal Design, the IDEA Center, AARP and Homemods.org are the best national listing of programs and businesses. The HHS Office on Disability has committed to placing such links on their website at www.hhs.gov/od.

Response: To the extent universal design helps people ingress into homes, it usually helps people egress as well. Home automation is also helpful in case of an emergency. Home automation can alert people quickly to emergencies, which is particularly useful for people with second or multi-floor access.

Response: Usually elevators/lifts have an automatic powerless “down” function. This enables the lift to descend to the lower level automatically and some have battery back-up devices. Some home modifications may also include back-up generators that could operate such equipment in case of emergency.

Michael T. Rose responded: His firm has experience with these types automation of features. It’s up to the individuals to determine what they need.

Kim Allen Beasley responded: Clients have invested in home automation. From the bedside one can perform a variety of tasks such as opening doors, turning on lights, and other important functions.

Janie Scott responded: The survey can be obtained directly from HHS or from the Homes for Life Coalition.

Kim Allen Beasley responded: Typically, the design firms do not work with the local housing departments. Accordingly, clients usually contact their local housing departments directly.

Michael Rose Responded: The Michael T. Rose firm offers numerous adaptability options on homes. The website, www.MTR.com has a whole section on universal design. In discussing the importance of forward thinking, Mr. Rose highlighted the case of home insulation which is ubiquitous today. In the 1960’s insulation was $195 but many people did not buy it because they felt it was an unnecessary cost. This is an example of not thinking in terms of long-term potential usefulness of an item. Building closets that can later be turned into an elevator is another example of an easy home modification that could pay dividends several years later. Mr. Rose noted that customers are often referred to other contractors for smaller jobs.

Marsha McLaughlin responded: In Howard County, there is a waiver program to help with renovations as well as links to contractors that would complete the work. It is helpful to work with contractors in building coalitions to make sure that people in the community can obtain the contracting services they need.

Marsha McLaughlin responded: Howard County has focused on new construction which is almost built out. The county believes in educating people about universal design and retrofitting their homes but they ideally focus on new construction. This is because the cost of retrofitting some existing stock of housing is often prohibitive given the limited resources available.

Janie Scott responded: The Office on Aging has made efforts to bring in Richard Duncan and other experts on this issue of maximizing resources and perhaps finding less expensive approaches to home modification. There is a need to partner with builders to bring greater flexibility to meeting the needs of the disabled.

Kim Allen Beasley responded: The prices obviously depend on the type of renovation being completed. Most builders do a good job building but the oftentimes builders have to deal with spaces that are poorly designed. Mr. Beasley noted that his firm hires good architects that work with the builders to make the space aesthetically pleasing. In the metropolitan Washington, D.C. area, one can expect to spend $150 per sq. foot for construction. Renovating other space is generally $80-100 per square foot.

Michael Rose responded: Other options include using a wood bar or installing a ledge, both of which are more visually pleasing than a standard grab bar.

Michael Morris responded: The design fund could be compared to taxes on phone service that are then used for funding other types of assistive technology. It is necessary to think outside the box to educate congress and state level officials. The afternoon session will focus on home modification and the available public moneys which are similar to housing trust programs in states. There are a number of funding streams that exist that support public funding. There is also complementary legislation pending at the federal level on accessibility as well as affordability.

Stephen Allen responded: Education and awareness of the issue are vitally important. There is a need to look at the possibilities of home ownership for those at or near the federal poverty level. There are many myths around people with disabilities and homeownership. People with disabilities can maintain a home. Moreover, there is a market for low and moderate income people to make improvements to homes but the awareness of opportunities and an understanding of the extent to which the market exists, is not fully developed.

Stephen Allen responded: Fannie Mae has an 800 number that consumers can use to get this information. There are not enough people with disabilities going into lending offices to get mortgages. There needs to be a greater understanding of what this market is and how people’s needs should be met. Unfortunately, the disabled community is at a disadvantage because individuals in many cases may know little about the issue and are unaware of what can be done to effect change. The Northern Virginia Council on Independent Living is a good organization to contact for more information on this issue.

Milton Turner responded: HUD monitors compliance with the grant closely and with the IRS at the local level. The penalty for noncompliance with the requirements of the grants is the loss of the tax credit, as well as other civil penalties.

Stephen Allen Responded: Fannies Mae’s customer service can walk people through the process. However, Fannie Mae does not often conduct business with individuals who rent their homes. There are however, multiple databases at state housing financing agencies that keep track of affordable rental housing. These databases may also contain information on purchase option programs.

Stephen Allen responded: Massachusetts is doing a lot of work in this area to keep track of housing developed by public financing and the percentage that is accessible. Their work would be a great model for states and localities to use.

Michael Morris responded: There is currently no requirement to set aside a certain percentage of housing for people with disabilities. However, the statutorily required planning process is a good forum in which persons with disabilities and their advocates can impact the process. In some cases, the planning agencies look at land use. It is necessary for people to be persistent and vocal in their ideas to influence how land is allocated. Mr. Morris emphasized that advocacy at the planning stages for such housing is of the utmost importance.

Michael Morris responded: Fair housing funding rules require that certain accessibility standards be met. Nevertheless, it is still necessary for communities to bring forth complaints and take action in order to get certain issues addressed, such as developers who do not meet the requirements.

Milton Turner responded: He stated that he is not aware of this issue, except in certain examples in Alexandria, Virginia. Section 504 does provide that 5% of housing must be accessible.

Richard Duncan responded: There is current legislation around single family housing that is funded by the federal government, which is a step in the right direction. A good resource for this topic is www.Concretechange.org, which has been tracking this type of legislation.

Kate King responded: CMS has been working on Universal design issues through its Systems Change Grants, .such as in Kentucky and Arkansas. For instance, the grantee in Arkansas partnered with the Supported Housing Office of Rehabilitation and the Governor’s Task Force on Supported Housing to educate people on universal design and the housing needs of persons with disabilities. The grantee in Maine designed a brochure on Universal Design concepts to serve as marketing material for families and consumers.

Richard Duncan responded: Some entities have done it. There was a study in Buffalo that may be ongoing. There is also research in Philadelphia in this regard. The difficulty is that one part of government pays for health care costs and another pays for costs associated with home modification. This presents obvious obstacles to increasing access to the certain necessary access modification features.

Question 2: Medicaid waivers pay for home modification. However, the funding seems to be applied inconsistently among various populations served by waivers. Is there anything HHS can do to make certain that all persons have access to a funding source?

Kate King responded: States have the option of developing waivers, and are responsible for designing them.. Your concern highlights the importance of involving disability advocates in the waiver development process to make sure that waivers provide the correct mix of services. For other ideas, Mary Jean Duckett will be responding to waiver issues later in the day.

Question 3: Is there a way to attach grab bars in showers?

Louis Tennenbaum responded: Yes. Once can use a “cousin” to the device that attaches to bathroom wall. It’s called a winget. Your local contractor or plumbing supply store should be able to offer assistance in obtaining this type of device.

Deborah Lisi-Baker responded: The requirements are mentioned in the materials that were prepared for the presentation and are available on the Office on Disability website. (To be eligible for building funds from HAP, applicants must have an income at or below 80% the HUD median income.) Most HAP applicants require grants rather than loans; but many are unaware of programs and services they are eligible for. Our Home Access funding Specialists and other VCIL staff help them identify other services/sources of funding. These include Community development block grants, Medicaid home and community based waivers, the Veteran¹s Administration, Fannie Mae, and other similar programs.

Louis Tenenbaum responded: People need to recognize that this is very difficult for contractors. Many are not trained or experienced in these types of projects. Contractors must begin to see that this is a market as well as gain education as to how to best accomplish the goals of building attractive accessible dwellings.

Mark Schultz responded: Yes. Nebraska has collected the relevant information but there has not been any formal cost-benefit analysis to date. However, the average cost of providing home modifications under the waiver is around $4,200 per individual. Based on the average cost per day of a nursing home stay in Nebraska, the cost of home modifications are easily justified by preventing institutionalization for less than one and a half months.

Frank Pinter Responded: In Maryland, CDBG funds have been used to help modify residential homes. This is a separate issue from funds available through either the Nursing Facility Transition grant (NFT) or the Living at Home: Maryland Community Choices program (LAH:MCC) to modify homes. Funding for modifications through these latter two programs may include ramps, doorways, environmental controls, etc. Two CILs in Maryland, Making Choices for Independent Living and Independence Now receive CDBG funds to construct ramps for people with disabilities. However, there are significant differences in the way in which the CDBG funds are used by each organization. MCIL’s funds are provided through Baltimore County and are used to construct ramps for people with disabilities who live in rental housing. MCIL does an assessment, solicits bids from contractors and coordinates the work to be done. Independence Now receives its CDBG funding from Prince George’s County and has a contractor on a retainer who performs the work. There are two significant differences in how each organization uses the CDBG funding. MCIL is only authorized to construct ramps for people with disabilities who live in rental housing in Baltimore County while Independence Now is able to use the funds to build ramps and to also widen doorways for homeowners. Secondly, MCIL solicits bids from contractors while Independence Now uses a contractor on retainer. As a result, Independence Now is affected by the Davis-Bacon Act and so the costs for the work it does is higher.

Louis Tenenbaum Responded: A card type system may work best. For example, one could waive the card at the receiver. Mr. Tennenbaum suggests calling apartment management companies or hotels which have a great deal of experience with these types of systems to explore feasibility and affordability.

Louis Tenenbaum responded: Mats on the floor of bathrooms can often cause problems. Mr. Tennenbaum suggests high friction tile as a viable option. He noted that it helps to break the potential slippage on a wet floor. Finally, he also believes in the use of hand rails and grab bars to increase safety.

Richard Duncan responded: Mr. Duncan mentioned the Echo Housing project(accessory apartments), which is no longer in existence. The construction of n-law apartments and zoning changes through local zoning boards are two options.

Louis Tenenbaum responded: There was funding of the Echo Housing project in the 1990’s. Research is currently underway to assess its overall success. At this point there is a large expense without a known prognosis. Mr. Tennenbaum believes that the country would be better off from universal design perspective if the problem were viewed from a more integrated perspective. Nonetheless, zoning issues do present difficult challenges. Finally, one advantage of modular add-ons is that they can be removed and resold which may make them more attractive from a cost perspective.

Frank Pinter responded: The Nursing Facility Transition (NFT) grant, awarded to Maryland and administered through its Department of Human Resources, was funded in the 2001 round of CMS Real Choice Systems Change grants. Simultaneously, MCIL was awarded an NFT – Independent Living Partnership (NFT-ILP) grant. The NFT grant provided each of Maryland’s six CIL’s with a Nursing Facility Transition Coordinator whose responsibility was to assist in the transition of Medicaid-eligible people with physical disabilities who lived in nursing homes back into the community. The Transition Coordinator located housing and coordinated getting the person needed supports. The NFT provided up to $1200 in funds to assist with start-up costs (security deposits, first month’s rent, utility deposits, furniture, and the like). The NFT-ILP, which MCIL applied for on behalf of all of Maryland’s CIL’s, provided for a Peer Mentor who would conduct outreach and education for all nursing home residents who expressed interest in returning to the community. In addition, the NFT-ILP grant allowed for the production of a resource guide – Moving Home, that was provided to any interested resident. The intent was that the Peer Mentor would generate interest and provide information to the resident and the Transition Coordinator would effect the transition.

Emphasis was placed on those residents under the age of 65 who would be able to enter into the Living at Home: Maryland Community Choices (LAH:MCC) program in order to receive long term supports. The LAH:MCC program, a 1915 C waiver, had $5000 in funds available to pay for environmental modifications. In this way, the chances for a person to transition to the community were greatly enhanced, given that funds for transitioning costs were available, modifications for accessible housing could be accomplished, and long term supports would be in place when the person transitioned back into the community.

The goal was to transition 150 people statewide back into the community over the three year grant period. It is expected that that goal will be met and exceeded.

Deborah Lisi-Baker responded: Ms. Lisi-Baker suggests always thinking more long-term on such projects. An investment now will pay off in the long run.

Frank Pinter responded: Regarding the 1915 C waiver program, yes, there is a waiting list, but the list is officially known as a Waiver Services Registry. The Registry was necessary because there is a cap on the number of slots available for the Living at Home: Maryland Community Choices program. The NFT grant ran into a different problem transitioning persons back into the community, which didn’t create a waiting list, but which created a need to prioritize who was able to transition, and that was the lack of accessible/affordable housing. Compounding the lack of accessible/affordable housing was the scarcity of HUD Section 8 or Mainstream Housing Choice vouchers. It became necessary to focus on transitioning people who actually already had a home to go to. Interestingly, in rural Western Maryland, the biggest impediment to a person transitioning back into the community was not housing but the scarcity of service providers (personal care attendants).

Frank Pinter responded: I’m not sure what you mean by those questions. Peer Mentors, through the NFT-ILP grant, went into nursing homes and sometimes literally wandered around the halls of the nursing home talking to people. Under Maryland’s Money Follows the Individual Act, passed into legislation in 2001, advocates cannot be denied going into nursing homes to discuss with the resident community options. Relationships were also eventually developed with nursing home social workers and discharge planners who helped identify people and, after a while - after the word got around - people began to self-identify.

As a result, and now after three years and the grant is almost over, residents are realizing that nursing home placement isn’t necessarily a lifetime sentence, and that there are options that could lead to going back home. The resource guide, Moving Home, has become another tool that the resident can use to explore returning to the community

Stephen Allen responded: ‘My community mortgage’ is a flexible program that allows for small or large projects to create and increase home ownership among low and middle income persons with disabilities. In order for home ownership among these populations to increase, access modifications must be made, and must be more accessible. The money available for these loans ranges from small amounts to up to 50% of the appraised value of the home. There are also state funds available. Mr. Allen pointed out the United Cerebral Palsy (UCP) of Texas guide as a reference. The state funded Fannie Mae to conduct training on these types of programs. One chapter in the guide focuses on the subject of developing a contractor base. The role of the consumer is also covered. Another point discussed is the process of connecting with lenders who may not have sufficient understanding of the issues associated with disabled home ownership, such as HFAs. For example, this has been done with addressing energy efficiency. Not every lender that does business with Fannie Mae can do this. Most of business is serving individuals at 40% of AMI.

Kate King responded: I have data that will provide some perspective on the States’ commitment to home modifications under the Home & Community-Based Waiver Program. Out of the 280 waivers, 187 currently provide environmental adaptations/home modifications, and six waiver programs provide vehicle modifications as well. And all states provide home modifications in at least one of their waiver programs.

Reimbursements for these services are increasing. In 1999, Medicaid expenditures for home modifications were $32.5 million, but in 2002, a little over $64 million was expended, clearly indicating that states are increasing their commitment to this issue. Further, the number of participants served is also increasing. In 2002, 32,500 participants received home modifications, nearly double the number of participants receiving this service in 1999, which was 17, 554. Clearly home modifications are a key service under the home and community based waiver program.

Also increasing in scope is the range of targeted population for such aid including: mentally retarded, elderly, persons with HIV/AIDS, technology dependents, persons with brain injuries, developmental disabilities and physical disabilities. Very few waivers specifically target the deaf and blind. However in many cases, they are included in broader populations.

Mary Jean Duckett responded: HHS encourages states to work with the disability community that they intend to serve in crafting waiver programs. There is no requirement of public notice, but they are encouraged to seek out information. States should be doing needs assessments of these individuals. CMS has said that anyone on a waiver program should have access to any services offered to keep them out of institutions. An individualized approach should be utilized for such services.

Mary Jean Duckett responded: Ms. Duckett denied that this would occur. The proper approach is to conduct individual needs assessment to determine the appropriate mix of services.

Milton Turner responded: Regarding cuts at federal level, groups must advocate to make sure that cuts do not occur. However, Mr. Turner noted that the fact that there are cuts does not dictate how the state spends its money. In other words, states would still be able to spend their money on these particular programs as they deem appropriate.

Mary Jean Duckett responded: There have been very few requests from states to reduce waiver services, and those changes that have occurred are related to improving efficiencies in waiver programs. For instance, states have reduced unused capacity; they have reviewed service utilization and removed services rarely used; and one state placed limits on pharmaceutical benefits that were previously unlimited. But states continue to request new waivers and to expand existing waivers.