Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities

It has been five years since Lois C. and Elaine W. successfully sued for the right to live in their communities in Georgia; in the landmark Olmstead decision the Supreme Court interpreted Title II of the Americans with Disabilities Act (ADA) to require states to administer programs “in the most integrated setting appropriate to the needs of qualified individuals with disabilities” (Olmstead v L.C. 527 U.S. 581). The Court noted, “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement and cultural achievement.” In the intervening years, Congress has appropriated funds for “systems change” grants and President Bush announced his New Freedom Initiative to “tear down barriers to equality” for individuals with disabilities or chronic illnesses. States and consumer advocates have responded to the Olmstead challenge with multiple strategies to strengthen programs that support individuals with disabilities to live successfully in their communities. One important component of these efforts is directed at nursing home transition.

Nursing home transition programs work to identify institutionalized individuals who want to move back to the community and to assist them to make the transition successfully. Transition works when an individual is highly motivated to succeed and invests himself or herself in the transition process. Beyond this motivation, transition is all about planning and more planning. This planning, while detailed, is not rocket science. It requires methodically thinking through all of the supports that will be necessary to support the individual in community living. Most of us have done this planning in our own lives without thinking much about it. Where will I live? What kind of home do I want? With whom do I want to live? How will I get around? How will I support myself? How will I manage my health? It is no different for individuals with complex support needs except that these complexities present more logistical challenges in planning and implementation.

In this article, we will look at the transition process from a systemic approach that focuses on the components of successful transition programs. The first step in creating a transition program is to think through all of the requirements for success. Without careful planning in the beginning, every transition program risks failure. To the extent it is politically feasible these programs also include diverse stakeholders in every stage of planning and evaluation. All successful programs consider in great detail at least the seven questions described below before embarking on any transitions.

How Will We Identify Appropriate Individuals?

If individuals don’t know they have a choice, they don’t know to speak up. Many individuals who live in institutions have been told that is their only option. Without education that community options exist, even for those with severe disabilities, these individuals are unlikely to ever consider whether they would prefer to live elsewhere. As one person asked, “What am I allowed to want?” (Assistive Technology Partners, 2004). Good programs educate broadly about available options, and put in place processes that allow the individual a strong and valued voice in expressing preferences for particular options.

Once a program knows who is interested, the next step is to assess with (not for) the individual what supports will be needed for a successful transition. Every institutionalized individual has a story to tell and this story is a good starting point for assessing the supports needed. A person’s story reveals what supports failed that led him or her into the institution in the first place. Good programs presume an individual can transition regardless of the complexities of support needs, and focus available resources to craft a customized plan.

How Will We Educate on Transition as a Viable Option?

Until nursing home transitions become more commonplace we can expect resistance from families and professionals who hold strong, if erroneous, beliefs that individuals with severe disabilities cannot live safely in community settings. Good programs work to educate families, professionals, providers and the public that community options not only provide safe living arrangements, but also lead to healthier outcomes and increased consumer satisfaction (Foster et al., 2003).

Are Community Supports Available?

Communities vary greatly in the amount of infrastructure they offer to support individuals with disabilities. Each transition plan must assess whether the local community structure is adequate to provide the supports that the individual will require. If not, creative problem-solving can be used to create new approaches of support that fill in the gaps in the community structure with less formal supports. Informal community supports can arise naturally through relationships with family and friends or can be arranged by seeking out volunteers from faith communities or other groups.

What Will be the Transition Process?

Individuals with complex support needs have to understand from the outset that making the transition may involve a lengthy process. The process will include all the following:

• Consumer interviews
• Person-centered planning
• Development of the transition team (consumer, family, friends, supports broker, other)
• Assessment of medical needs
• Assessment of support needs
• Assessment of gaps in community infrastructure
• Solutions to fill community gaps
• Concrete plan
• Consumer contract
• Timelines and checklists
• Quality assurance/improvement
• Transition day planning
• Follow-up

The individual has to consider how all the supports he or she has relied on the institution to provide will be obtained in the community. Institutions generally provide housing, utilities, meals, medical and dental care, transportation, social events, religious services, and personal care by professional staff. Many individuals develop a dependency in the institutional environment and need help to think through how to manage for themselves in the community. Key areas to explore include:

• Housing
• Transportation
• Recreation/social interactions
• Spiritual/religion
• Utilities
• Work
• Income sources
• Assistive technology/home modifications
• Personal assistants
• Funding of supports and expenses
• Dental needs
• Medical needs including insurance and finding a primary care physician
• Mental health/substance abuse issues, if applicable
• Case management, if appropriate

Do We Have Assessment Tools and Train Staff in Their Use?

Successful transitions involve evaluation of an individual’s needs across all aspects of community living. Good programs develop practices that standardize the assessment processes that will be used throughout the transition. Much of this standardization is accomplished through the development or acquisition of tools that can assess an individual’s support needs, assess community capacity, and assist the individual to create a community living plan within the resources available. Once the tools are available, extensive staff training in their use assures the integrity and consistency of the transition program. Michigan characterizes staff needs to include “people who are knowledgeable about resources, familiar with how nursing homes function, skilled at building rapport and trust, experienced in assessing care needs, and alert to medical issues. Additional traits are resourcefulness, creative problem-solving, strong organizational skills, reliability and attentiveness to detail” (MACIL, n.d.,p. 9).

What is the Follow-Up Plan?

No matter how careful the planning, the individual and those assisting him or her must expect the unexpected. The dynamics of community living will produce challenges that no one anticipated in the transition process. Follow-up strategies assure that the individual has support to confront and meet these unexpected challenges, including strategies for back-up for personal care workers and strategies to manage acute health events that may result in short-term hospitalization. Good programs have follow-up procedures for the day of the transition, the week after transition, the month after transition, and ongoing as needed by the individual. These programs also recognize that re-learning to live in the community is itself a dynamic process and that many individuals want to work into full independence over time; these individuals may require long-term follow up.

Do We Have a Quality Management and Improvement Strategy?

A quality assurance and improvement strategy for a transition program accomplishes multiple goals. It measures outcomes with meaningful metrics, provides a mechanism for continuous feedback from the individuals in the program, and generates the data to justify continuation of the program. Good programs routinely measure outcomes and consumer satisfaction and use the data collected to evolve new strategies to improve both.

Conclusion

Experience shows that individuals of all ages who have complex support needs can successfully transition from institutional settings to community living. Success requires a motivated individual together with careful and comprehensive planning that views the individual holistically. And, in the long run, individuals who sustain success surround themselves with family, friends, and others who can help create an environment in the community that supports them to live the life they choose.