Helping people to live independently means saving money and improving their health
Helping people to live independently means saving money and improving their health
January’s Centers for Health Care Strategies brief on two community integration projects demonstrates the challenges associated with nursing home transitions and the potential benefits of community-based care, including fiscal benefits and improved health outcomes.
An evaluation of Wisconsin’s Family Care Program included in the report shows the benefits that accrue when people are helped to live independently. The report also describes programs conducted by Alpha One Independent Living Center in South Portland, ME, and a State of Utah project conducted with an Olmstead planning grant.
In Maine, Alpha One’s project was intended to improve the quality of life and health status of non-elderly adults with a range of disabilities by enabling 40 nursing home residents ages 18 to 65 to transition to the community. During the project, first funded with a Robert Wood Johnson Foundation Building Health Systems for People with Chronic Illness demonstration grant in 1995, 56 nursing home residents were assisted in identifying goals and strategies for living independently, and 25 actually left nursing homes to live in the community.
The company determined that an effective and consistent outreach strategy to nursing homes was critical in identifying residents with disabilities who had the potential to transition to community living. Alpha One developed mailings and gave presentations to nursing home staff to educate them about its Home to the Community program, and found that it was most important to contact staff that provide direct service to nursing home residents — especially nurses, therapists, and social workers. Because there often is considerable turnover in these direct-service positions, it’s necessary to repeat the outreach activities periodically, they found.
Alpha One determined that consumers living in institutions often need to develop basic skills such as decision making, personal finance, budgeting, and self-managing health needs to transition from nursing home to community. Because Medicaid has not paid for such training for nursing home residents, Alpha One met with the Health Care Financing Admini-stration (now the Centers for Medicare & Medicaid Services) and received approval for Medicaid funds to be used to provide training to consumers transitioning from institutional care to the community. Approval also was received from the Maine Bureau of Medical Services to provide occupational therapy services and conduct wheelchair evaluations to facilitate acquisition of manual and power wheelchairs.
Other barriers identified by Alpha One include:
- Maine’s limited supply of accessible and affordable housing;
- cumbersome procedures and lack of financing to acquire assistive technology;
- inaccessibility of provider offices and the small number of providers who accept Medicaid payment;
- limited access to transportation, particularly in rural areas;
- unwillingness of many nursing homes to participate in Home to the Community.
Evaluation of Alpha One’s efforts showed that those consumers who reside the shortest amount of time in nursing homes are more likely to be able to move successfully into the community. Other key attributes of those who wanted to move into the community were that they were more likely to believe they could be more independent in daily activities; more likely to have diabetes or depression; less likely to have short-term memory problems or incontinence; more likely to understand and be understood by others; and more likely to be comfortable initiating activities. In addition, program participants had higher rates of discharge from nursing homes, lower rates of readmission to a nursing home, and lower death rates than members of a comparison group.
In Utah, an Olmstead planning grant enabled Medicaid beneficiaries to transition out of nursing facilities to community-based living within a managed long-term care program. The Utah Division of Health Care Financing used the grant to educate consumers about the variety of long-term care and community-based programs available; provide an opportunity for interested residents of nursing homes and swing-bed hospitals to work with state Department of Health representatives to identify specific needs for services and supports; identify clinical and psychosocial conditions of individuals in the nursing facility population for which community-based services and supports are not available to provide alternatives; and identify gaps in the system that pose barriers to successful transition of patients from nursing facilities to noninstitutional settings.
To achieve a participation rate of 79% of nursing homes and swing-bed facilities, the division’s Long- Term Care Unit conducted a state-wide campaign using education teams to inform nursing home residents about community-based long-term care options. Two-member education teams were staffed from Area Agencies on Aging, local health departments, and independent living centers.
Nearly 1,000 out of 5,127 residents at the 85 participating facilities attended voluntary educational sessions. Residents who expressed an interest received an intensive-needs assessment administered by a clinical team. The team identified the services and supports necessary for the residents to make a transition to the community and evaluated availability of publicly funded services to meet the needs. Some 146 of 181 people who participated in an individual interview requested a needs assessment, and within eight months, 30 people successfully made the transition to the community.
Utah administrators said it was helpful that the clinical teams tended to be conservative in assessing transition potential, generally basing evaluations on availability of traditional health services and formal programs that rely heavily on a hands-on, direct-care approach. State officials recognized, according to the report, that insufficient use was made of available resources to substitute for direct-care staff, including assistive technology devices, specialized medical equipment, environmental modifications, or use of nontraditional caregivers, such as personal assistants, in place of professional agency staff.
When clinical teams worked with residents interested in transitioning to the community, they moved into case-management roles, shifting emphasis from sharing general information to providing information only about specific programs that the team determined to be appropriate for each individual. The report said this approach somewhat reduced the decision-making power of residents, since they did not always receive all available information with which to make their decisions.
Lack of housing greatest barrier
The state found that a lack of affordable, accessible housing was the greatest barrier to transition for the general population of institutionalized people. Barriers to accessing housing exist not only as a result of a statewide shortage but also from a shortage of subsidies for low-income people and the fact that payment for room and board expenses are prohibited under traditional Medicaid home- and community-based services.
State officials said the project also confirmed that there are specific subgroups in nursing facilities for which alternative services and settings do not yet exist, including those with severe chronic behavioral conditions, those who are routinely noncompliant with treatment regimens, those with poor decision-making ability, those with alcohol and substance-abuse problems, and those frequently requiring skilled nursing intervention.
Recommendations coming out of the demonstration include greater oversight of clinical and educational teams; redesign of controls to ensure that consumers maintain decision making; revision of tools used for reporting information to participants to better guide team members on available options, limitations to alternative choices, and barriers that need to be overcome to increase choices; and attention to community resource issues concurrently with conducting outreach efforts to nursing facility residents.
Meanwhile, the Department of Health and Human Services (HHS) said President Bush’s FY 2004 budget request includes a new $1.75 billion, five-year program aimed at helping Americans with disabilities move from nursing homes and other institutional settings to living in the community. An HHS news release stated the proposal is one of several in the budget under the president’s New Freedom Initiative, a nationwide effort to integrate people with disabilities more fully into society.
"The New Freedom Initiative was one of the earliest actions announced by the president in his first days in office," said HHS Secretary Tommy Thompson. "The president and I are committed to changing policies that unnecessarily confine people with disabilities to institutional settings. We want to work with the states and the disability community to change old programs and develop new ones that will serve people with disabilities in the settings that work best for them."
Included are:
• "Money Follows the Individual" rebalancing demonstration. This five-year demonstration would assist states in developing and implementing a strategy to rebalance their long-term care systems so there are more cost-effective choices between institutional and community options, including financing Medicaid services for individuals who transition from institutions to the community. Federal grant funds would pay the full cost of home and community-based waiver services for one year, after which the participating states would agree to continue care at the regular Medicaid matching rate. This demonstration would build upon success stories in Texas, Wisconsin, Michigan, and Washington, and also would provide incentives to states for increased use of home and community-based services and would help provide information on costs of different approaches.
• New Freedom Initiative demonstrations. This initiative would fund four demonstrations that promote home and community-based care alternatives. Two of the demonstrations would provide respite care services for caregivers of adults with disabilities or long-term illness and children with substantial disabilities. Another demonstration would provide community-based alternatives for children who are currently residing in psychiatric residential treatment facilities. Thompson said the president proposed these demonstrations for FY 2003, but it is not expected that Congress will include them in its final FY 2003 appropriations.
• Spousal Exemption. This proposal would continue Medicaid eligibility for spouses of disabled individuals who return to work. Under current law, individuals with disabilities might be discouraged from returning to work because the income they earn could jeopardize their spouses' Medicaid eligibility. This proposal would extend to the spouse the same Medicaid coverage protection now offered to the disabled worker.
Thompson said the budget also will propose establishing a new state option enabling Medicaid presumptive eligibility for institutionally qualified individuals who are discharged from hospitals into the community. This would make it more feasible to discharge a person who has been hospitalized to the community rather than to an alternative institutional setting. And it proposes to expand "System Change Grants" to support states in their planning to create new systems to support people with disabilities in communities instead of institutions.
Advocates not sure of impact
The announcement was greeted with restrained joy by American Disability Association president William Freeman, who tells State Health Watch that, "In a country where people with disabilities who rely on our government for their support are impoverished by the same programs that the government claims are there to help them, it is difficult to be excited by the latest whitewash."
Mr. Freeman points out that the notion of using personal care attendants instead of institutional care was first advanced nearly 20 years ago, especially by disabled rights activist Ed Roberts and the World Institute on Disability. "At a time when our nation’s population is aging rapidly, and the ability of existing institutional systems to house the severely disabled elderly population is strained at best, it isn’t a surprise that the government now embraces this reform," Mr. Freeman says. "The real question that should be asked, at a time of ballooning state deficits, is why such a reform couldn’t have come much sooner. Perhaps one day, someone in government may realize that allowing people with disabilities sufficient resources to live without being impoverished is also a very good idea. We won’t be holding our breath."
In Texas, where one of the projects that Thompson said has been successful is under way, Department of Human Services assistant deputy commissioner for long-term care Becky Beechinor tells State Health Watch that after the U.S. Supreme Court’s Olmstead decision, then-Gov. George W. Bush issued an executive order calling on the Health and Human Services Commission to work with state agencies to develop and promote an independence plan.
Activities under the plan included notifying nursing home residents of their options for remaining in their facilities or moving out to a community; providing Internet information on the independence initiative and available options; using enhanced funding to promote independence activities, including contracts for relocation services from nursing homes for those who wanted to transition to home or the community; and community outreach efforts on available options.
As of Dec. 31, 2002, more than 300 people had been identified who wanted to transition to a community living arrangement, and 38 had been successfully moved. The one-year contract with the relocation firms will undergo a thorough evaluation on several criteria so best practices can be applied in the future, Ms. Beechinor says.
An appropriation rider that passed the last session of the Texas legislature allows the money to follow the client, she adds. Under provisions of the rider, individuals who are living in nursing facilities and receiving Medicaid payments can take the money into the community to pay for their care there. The clients can go to a variety of settings, including their own homes, assisted-living facilities, and group homes. Ms. Beechinor says the program can be cost-effective because community care costs less than nursing facility care.
Given that there are some 65,000 people in nursing homes who are covered by the state, the program to move people into the community remains small but could grow if funding is available. Ms. Beechinor says she’s waiting to hear more about the federal demonstrations that are being proposed and is interested in seeing if Texas could participate. "We need to always remember that clients should have a choice," she says. "We want to know that all clients have an opportunity to choose the setting that they feel best meets their needs."
[Government information is available at www.hhs.gov. E-mail Mr. Freeman at [email protected] or [email protected] and contact Ms. Beechinor at (324) 438-2936.]
Januarys Centers for Health Care Strategies brief on two community integration projects demonstrates the challenges associated with nursing home transitions and the potential benefits of community-based care, including fiscal benefits and improved health outcomes.Subscribe Now for Access
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