“I need help. I don’t want to live here, in this nursing home any more, but nobody seems to be listening. It’s been ten long miserable years since I had a ‘normal life’ in the community. I want the freedom to be on my own again and to do things with my friends. All of the kids I was in high school with now have jobs and families of their own, and lives! I know since the accident, I’ve lost a lot of my ability to get around on my own, but I know I could make it in the community!”
Meet Chelsea, age 27, who lives in Valley Haven, a for-profit nursing facility, where over 250 people live.
The Supreme Court decision known as Olmstead vs. L.C., has changed the landscape for disability advocates. It provides the framework for advocacy to support persons with disabilities to transition out of nursing homes and other institutions into the community. Olmstead also supports persons with disabilities to remain in the community and not be placed in institutions.
- In Ohio, 80% of the long term care dollars are spent in institutional care vs. home and community based services.
- In Ohio, over 10% of the residents in nursing homes are under the age of 60, and that number is climbing.
The Americans with Disabilities Act (ADA) was a huge breakthrough for persons with disabilities. The Olmstead decision was based on the ADA. In 1990, President George H. W. Bush signed the ADA into law. Title II of the ADA prohibits state and local governments from discriminating against people with disabilities in the provision of public benefits and services (e.g. public education, employment, transportation, recreation, health care, social services, courts, voting, and town meetings).
The regulations implementing the ADA state that a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.ii ADA (28 C.F.R. § 35.130(d))
The most integrated setting is defined as “a setting that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible”.iii ADA (28 C.F.R. pt. 35, App. A, p. 450)
Advocates were able to use the Americans with Disabilities Act to challenge states that only provide extensive care and supports in institutions. This meant that the only option for people with disabilities was to live in segregated settings. Advocates argued that states were not following the law because they were only providing services in segregated settings. One of these challenges—Olmstead vs. L.C.—went all the way to the Supreme Court.
What is Successful Transition?
It is crucial to remember that successful transition is much more than someone changing where they live. The move from a nursing home to a residence in the community is much more than a physical change. It includes an increasing sense of self-direction and decision-making on the part of the individual who is transitioning. It often means not only living where one chooses, but also becoming a full participant in community activities. Living in the community also means developing and using informal supports as well as the more formal supports and services. As a transition facilitator, you are not solely responsible for the success of the transition. You do have a critical role, but success is also dependent on the individual themselves and their willingness to take a proactive role in the process and commitment to change.
The Role of the Transition Facilitator
Transition facilitators have multiple roles. Although this is not an exhaustive list, it should give a sense of the complexity of what facilitators do.
- Be an effective peer mentor. You are supporting someone as they reclaim their life. Remember, it is their life, not yours and they need to be directing what happens.
- Understand what brought the person to the nursing home. The same things that brought them there may be barriers to a successful transition to the community.
- Be a good listener who hears both words and feelings.
- Recognize that the individual’s emotions of fear, anger, and anxiety are real. Name them and discuss them.
- Be knowledgeable about the possible types of supports and services available in the community and how to access them.
- Provide accurate information in a timely manner. Don’t over promise.
- Explore options with the person, don’t just push what you think is best.
The critical components that contribute to the success of the transition include: developing a trusting relationship and having a comprehensive assessment that clearly reflects needs, concerns, and priorities; developing and implementing a Transition Plan that addresses the individual’s needs; and critical follow-up and post-transition activities.
Excerpts from The ABC's of Nursing Home Transition. A Publication of the IL Net National Training and Technical Assistance Program at Independent Living Research Utilization developed in Collaboration with Utah State University Center for Persons with Disabilities
Money Follows the Person
The MFP Rebalancing Demonstration Program was authorized by Congress in section 6071 of the Deficit Reduction Act of 2005 (DRA) and was designed to assist States in rebalancing their long-term care systems and help Medicaid enrollees transition from institutions to the community. The MFP Demonstration Program reflects a growing consensus that long-term supports must be transformed from being institutionally based and provider-driven to "person-centered" consumer directed and community-based. Congress initially authorized up to $1.75 billion in Federal funds through fiscal year (FY) 2011 to:
- Increase the use of HCBS and reduce the use of institutionally-based services;
- Eliminate barriers and mechanisms in State law, State Medicaid plans, or State budgets that prevent or restrict the flexible use of Medicaid funds to enable Medicaid-eligible individuals to receive long-term care in the settings of their choice;
- Strengthen the ability of Medicaid programs to assure continued provision of HCBS to those individuals who choose to transition from institutions; and,
- Ensure that procedures are in place to provide quality assurance and continuous quality improvement of HCBS.
Section 2403 of the Affordable Care Act (ACA), which President Obama signed into law on March 23, 2010, provides an opportunity for additional States to participate and for those States that are presently participating in the program to continue building and strengthening their MFP Demonstration Programs. The law amends section 6071 of the DRA to make the following changes:
- Extends the MFP Demonstration Program through September 30, 2016, and appropriates an additional $450 million for each FY 2012-2016, totaling an additional $2.25 billion. Any remaining MFP appropriation at the end of each FY carries over to subsequent FYs and is available to make grant awards to current and new grantees until FY 2016. Grant awards will be made available to the States for the FY in which the award was received and for four additional FYs. As such, any unused portion of a State grant award made in 2016 would be available to the State until 2020.
- Expands the definition of who may be eligible for the demonstration to include individuals that reside in an institution for more than 90 consecutive days. However, with one exception for days that an individual was residing in the institution for the sole purpose of receiving short-term rehabilitation services that are reimbursed under Medicare are excluded and will not be counted toward the 90-day required period.
With the addition of thirteen new State grantees in February 2011, 43 States and the District of Columbia are currently implementing MFP Demonstration Programs. States began actively transitioning individuals into community settings in the spring of 2008. Each year the number of participants transitioning has increased as solutions to barriers were identified and significant technical assistance is continuing to be provided to help States meet transition goals. As of December 2010, almost 12,000 individuals have returned to the community as a result of these demonstration programs.
The States Participating in the Program are: AR, CA CO, CT, DE, FL, GA, HI, IA, ID, IL, IN, KS, KY, LA, MA, MD, ME, MI, MN, MO, MS, NC, ND, NE, NH, NJ, NM, NV, NY,
OK, OR, PA, RI, SC, TN, TX, VA, VT, WA, WI, WV and the District of Columbia
The Access Center is a Transition Coordinator for Ohio's Money Follows the Person grant: HOME Choice