Since the passage of the Olmstead Act several years ago caregivers have been waiting for their individual states to implement the mandates of the Act. This responsibility has fallen on the shoulders of units on aging and departments of elder affairs nationwide. Unfortunately, with so many new elected officials coming on board and with so few caregivers aware of the implication of the Olmstead Act, no significant progress has been made to implement the Olmstead Act as mandated by the courts.
The implementation of Olmstead was supposed to be a funding and policy priority, but it has not been. The plan for the implementation of the Olmstead Act is very simple; it provides more funding for community based services so more frail individuals could be moved from nursing home back to the community and homes they love. Olmstead provided a simple message: More funding to community based programs and less funding to institutional care, more funding to Medicaid waiver programs and more “pilots” under Medicaid waivers designed so families can keep their loved ones at home with the support they need. Support in the form of personal care, home health, meals, senior companions, respite, adult day care and assisted living options.
In Florida the effort has only experienced one brief shining moment back in 2000 when a group of nurses and social workers working for the state aging program evaluated 600+ nursing home residents to see if they could be safely moved back to the community. This heroic effort on the part of the dedicated state workers resulted in 21 nursing home residents being moved back to the community. These 21 nursing home residents were moved back with the consent and blessing of the 21 residents themselves and their families. Jeb Bush, my boss at that time, appeared with me in a press conference declaring victory. He showcased the result of the government workers’ effort in his 2001 State of the State address by mentioning the story of one of the residents.
Of those 21 individuals, one has been in the Nursing Home for approximately 10 years, a second one was a nursing home resident for 7 years and a third one for 5 years, proving that even individuals that have been living in an institution for a long time can be supported in the community with the appropriate services and the appropriate funding. If this was possible, imagine what can be done with those frail individuals that are still at home or residing in an Assisted Living Facility.
This magnificent effort on the part of the CARES units and of the Department of Elder Affairs has been forgotten. While the action we took in 2000 has a tremendous human value, it was also a magnificent Cost Avoidance program. There is no question that the program could be replicated all over the nation if elected officials are willing to make a commitment to support appropriate funding and authorizing new agencies and new services to be part of their aging providers’ network. I mentioned adding new service providers to offer services because the existing service providers’ network has cornered the market with its exclusive contracts, limiting the number of clients they can serve and the geographical areas where these options will be available to caregivers and elders.
This effort faded away in Florida in 2002, and I am not aware of any other state that replicated the effort. It is time to educate our caregivers. The more they know about the laws the better they will be when it comes time to protect the people we love.
If you are a caregiver you need to find out what your individual state did under the Freedom of Choice presidential funding award. Ask for a copy of the grant or request, through your elected official, where the funding went. If your state did not apply for the funding or failed to address this important population, it clearly demonstrates it has no serious intention to comply with the Olmstead Act not now, not ever. Your request to your elected officials should also explore the amount received by your state aging agency under the Caregivers’ Initiative Program, most importantly, how your state aging agency used the money to support caregivers in their daily tasks. Some states like Florida are using the money for training, posters, travel for the officials, and billboard ads when in reality the money should go for Respite, Adult Day Care and even diapers.
The caregivers’ Initiative was conceptualized under the Clinton Administration with bipartisan support. This administration has changed the focus somehow by showcasing caregivers for their efforts, but limiting the funding when it comes to increasing the number of hours of services they can receive or reducing the waiting list for services. Look between the lines and make sure the dollars are going where they are supposed to go and not to cover other programs and deficits. Olmstead is more than a promise, it is a legal mandate to the states to look at the Nursing Home population and better yet, to reassess that nursing Home population for a possible return to the homes and families they left behind.
Dr. Gema Hernández