Eugene is 64 years old with a long history of coronary heart disease. He has a tracheotomy to help breathe and spent more than a dozen years in nursing facilities. But after two failed attempts to move out of the facility and into the community, he finally has an apartment of his own and he’s going back to school.
His story is marked by both tragedy and successes. But Eugene’s story is also proof that where there is a will to persevere and support to help make it happen, people with disabilities and complex needs can thrive in the community, improve their quality of life and save the state millions in far more expensive care.
In 2011, after a health crisis that required time in a rehabilitation facility to relearn how to walk, talk and eat, followed by years languishing in a nursing facility, Eugene made a plan to move in with his son. But that was abandoned when his son died unexpectedly and a follow-up plan to move out in 2015 was scuttled when the home was sold.
But then in spring of 2017, with the help of one of the state’s five Independent Living Centers, Eugene was finally able to find an apartment in Torrington, and to and put together a care plan to live there on his own.
Health aides come in a few hours of the day to assist with the trach tubes and some housekeeping. But Eugene makes his own meals and washes his dishes. After nearly a year in the community, he has been able to lose weight and gain strength to get rid of a power wheelchair, then walker, and now walks with the use of a cane. He’s also taking criminal justice courses on line and hopes to get his degree this year.
Eugene is one of thousands across Connecticut who turn to Independent Living Centers every year to get help with living skills, finding and adapting housing to meet their needs, finding employment, and getting health insurance and medical care. He is one of thousands who by moving into the community, become part of the local economy.
The Money Follows the Person program that helped Eugene is just one provided by the centers, and it has saved the state more than $10 million already by moving people out of nursing facilities. The centers also save money by preventing placements in nursing facilities through funding for structural modifications, security deposits and first month’s rent, personal assistance and transportation.
The five centers have provided all of these services for $529,000, a surprisingly modest amount in Connecticut’s $28 billion annual spending plan. That funding has fluctuated in recent years – cut in half to address a revenue shortfall; then eliminated altogether in some proposals; most recently, restored in part by lawmakers; and now in the current budget at $309,407.
The cuts have had an impact. At full funding, the centers, located in Hartford, Naugatuck, Norwich, Stratford and West Haven, were able to serve people with disabilities in all of the state’s 169 towns. With budget cuts, service areas have been reduced to only 25 cities and towns, and many staff members, who in most cases are peers who also live with disabilities, were laid off.
It is clear that the more lawmakers and policymakers understand about our work and its impact on the state budget and the economy, the more supportive they are of our funding needs, and for that we are grateful.
But, the governor and the General Assembly need to fund the Independent Living Centers so that they can continue to provide vital services that allow people to live in the community. It is the role of government to support individuals and provide the tools they need to live life to their full potential.
Eugene’s story shows the very real difference Independent Living Centers are having in lives across our state. We urge the General Assembly to not just renew, but sustain and stabilize support for Independent Living Centers and make Eugene’s story the norm and not an exception.
Eileen Healy is Executive Director of Independence Northwest and Past Chair of the Connecticut Independent Living Council.