Going Home
For many, the benefits of making the transition from a nursing home back into the community certainly outweigh the challenges. Improved quality of life, independent decision-making, better control of health care and potential cost savings are just a few of the many advantages to home and community-based living.
In 1999, the U.S. Supreme Court’s landmark decision in the Olmstead v. L.C. (Olmstead) case found that, under the Americans with Disabilities Act (ADA), people with disabilities have a qualified right to receive state funded supports and services in the community rather than institutions. For many, making this transition can certainly be a life-changing experience.
Easing the Transition
“For many people living with a disability, the biggest challenge to transitioning out of a nursing home is not knowing that they have a choice,” said Norma Robertson-Dabrowski who has been living with quadriplegia since a 1982 car accident. “They don’t know that they have an option to live in the community with services and what a difference this can make in their lives.”
After her accident, Dabrowski spent seven years in a nursing home before learning about Liberty Resources, a Philadelphia, Pa, not-for-profit organization that advocates and
“Fear and uncertainty can become a barrier to living independently,” said Dabrowski who now works as Liberty Resources’ Nursing Home Transition Administrator. “It is important to educate people about their options. Many don’t know that services are available to help them transition and build an independent life in the community.”
On average, Liberty Resources helps about 40 people a year transition out of nursing homes. Most people are referred to Liberty by prior clients, nursing home staff or a family member. While Liberty Resources staff works on finding affordable and accessible housing, the person transitioning has access to a variety of social and skill-building resources.
“Our peer support service connects each person with someone to talk to who has had a similar experience,” said Dabrowski. “We also offer weekly social group gatherings to connect people who are thinking about transitioning with those who are already in the community.”
Skills training classes in financial management, accessing public transportation, communication skills and health, wellness and nutrition are offered prior to making the move to prepare for independent living. Liberty Resources also helps with choosing a support coordination agency to coordinate services once the transition to the community is made.
“The benefits of independent living improve quality of life in so many ways,” said Dabrowski. “Regaining the ability to get up when you want, eat what you want and direct your own care provides a new-found freedom. Living independently enables you to think for yourself and do so many things other people take for granted.”
Facing Uncertainty
While independent living services, such as Liberty Resources, are helping thousands of people make the transition across the country, others are making the transition on their own. For some, sheer determination and a strong sense of self-advocacy have helped them make the move.
After the late Betsy V. sustained a spinal cord injury in 1997, she spent time in four different hospitals and a rehab center before moving into a nursing home. Determined to continue to pursue her life goals, she enrolled in community college near her nursing home, found a vocational rehab center to provide her with transportation and began to research other options online.
“The internet showed me that there were others who were disabled who lived with families or were living on their own, and this became my gateway to understanding I could have a somewhat independent life again,” said Betsy.
She discovered that she could move to a bigger university and continue to receive vocational rehab care on a Medicaid waiver. At school, she lived in a studio apartment, took advantage of university life and graduated with the degree she always envisioned. Since then, Betsy has spent the last 16 years working for the U.S. Department of Energy, and will soon transition to a new position in Washington, D.C.
“I just wanted to be like anyone else,” said Betsy. “The main thing is to always network with people, but don’t allow yourself to feel isolated. The more you network, the more you’ll learn.”
Taking Control
Edna Sutton took learning to a whole new level. After spending a year in the hospital and two years in a nursing home following her injury, Sutton was also determined to live independently. Living with quadriplegia since 1988, she relied on in-home care while she earned her GED and enrolled in business classes. Often the people sent to help Sutton didn’t know proper bathing, transfer or catheter technique care.
“Cleanliness was a big issue,” said Sutton who found herself retraining the caregivers
In 2008, she launched her new venture, Compassions Training and Awareness Center, and received a Reeve Foundation Quality of Life Grant to help get her business off the ground. To date, Compassions has trained more than 600 people.
“For me, a disability is not a state of being, it’s something you learn to live with. I am still a person with goals to reach,” said Sutton. “We face more challenges but we can still be successful.”
The Reeve Foundation’s Nursing Home Transition Grants Program
In 2017, the Christopher & Dana Reeve Foundation’s Paralysis Resource Center (PRC), in partnership with the Administration for Community Living (ACL), established a Nursing Home Transition Grant Program to help seniors and individuals with disabilities transition from a nursing home into a home or community based setting and fully participate in their communities. The program was developed to enrich quality of life through increased access, independence, community activities and inclusion in society.
Four grants were funded in 2017 to address the program’s goals:
Learn more about the Olmstead Decision.