Monday, February 21, 2005

Current events

During the last couple of weeks, the desire for Home and Community Based Services (HCBS) has been getting alot of press here in North Dakota.

Recently WDAY-TV in Fargo did a two-part story on a gal with dementia who is fighting to stay out of a nursing home. She currently is getting help from the county but the county wants to discontinue home care services because of her dementia. Our government agencies are too quick to just toss someone right into a nursing home where their quality of life greatly decreases. Her family is fighting the county in court to stop the county from putting her in an institution. I hope they are victorious. It's time for the government to be held accountable to the civil right's of it citizens. There are many voices that are speaking out against oppression and institutionalization. I'm proud to be one of them.

Last week I was happy to watch the efforts of some of my advocate friends in Fargo. Freedom Resource Center hosted a press conference that focused on the need for increased major funding for home-based care. Right now nursing homes get 90% of all funding while home based care only gets10%. That is just wrong and shameful. My friend Gyle, who is on a vent 24/7 like me spoke on how he has stayed out of a nursing home for 15+ years. Now if he can stay in his own home, then almost anyone can. I want to give kudos to the TV & print media to giving coverage to this event.

It is exciting to watch an issue close to my heart and the heart of many others get attention. Stay tuned!


The Nodakwheeler

Tuesday, February 01, 2005

My Letter To The Editor

Last Friday, the Jamestown Sun published a letter I wrote. It was a response to a letter written by Gary Riffe a Jamestown nursing home. His letter is first, then my response is after it.

The Nodakwheeler

Many professions help deliver long-term care to those in need

Recently in The Jamestown Sun there was an article in the letters to the editor that North Dakota nursing homes know how to lobby. I find it very interesting in that there was some sarcasm in that particular letter even though there was a compliment
in the fact they felt nursing homes were effective lobbyists.

We know that the people who work in long-term care are very passionate about their jobs. We know the families who entrust their loved ones into our health care communities are also very passionate. If we are an effective lobby group, it is because we have very compassionate people asking the Legislature to provide the necessary funds for long-term care. That brings up a very good discussion. The nursing home of today is quite different than the nursing home of 25-30 years ago.

Today residents come for very short stays and sometimes for repeated stays. There are some residents who will make the nursing home their final home. We have found in the Jamestown facilities that almost 40 percent of the residents that come to live in a nursing home are discharged to their home, assisted living, basic care, or possibly even another nursing home in another community. Again, that is much different than 25 and 30 years ago.

There are more services available in the community of Jamestown and surrounding communities for home-based care. The Gardenette was about the only senior housing available in the area 25 years ago. Since that time we have the James House, the Post House, assisted living facility at Central Dakota Village, Roseadele which is a basic care for treating Alzheimer and dementia residents, and Rock of Ages and Bethel 4-Acres which both provide basic care. Jamestown Hospital and Central Valley Health also provide home- and community-based services. James River Senior Center providesmeals on wheels and transportation , things we never had 25 and 30 years ago. All these things have come about because citizens who care about citizens have asked for those services to be provided. So I find it interesting that the writer would single out one particular profession when it takes a lot of different professions to really deliver the
continuum of long-term care.

Gary M. Riffe

Community-based care needs an equal playing field in N.D.

I am writing in response to the Jan. 24 letter to the editor written by Gary Riffe that was printed in The Jamestown Sun. There are quite a few things in that letter that I would like to take issue with.

First off, I would like to say there is no doubt in my mind the power of the nursing home lobby in North Dakota. They sure do a fantastic job of protecting their financial standing and future while at the same time helping to deny the right of many North Dakotans to live in the community. I guess they figure the current system is working great, but that’s not the way I see things.

You see I am a 29-year-old who is stuck living in the institutional care system in our state. I don’t want to be in a nursing home but am forced to because home- and community-based services are severely under funded in North Dakota.

Riffe listed many places in Jamestown that provide assistance to the elderly and folks with disabilities, but he left out the Dewey Apartments. Before entering the nursing home in 2003, I received 24-hour-a-day care through a Medicaid waiver for almost nine years at the Dewey Apartments in Jamestown. I lived in my own apartment and was given much more choice and freedom in living my life the way I wanted to than I am allowed now. I was forced into the nursing home only because my disability required additional help for my needs.

I do agree that the people who take care of the elderly and folks with disabilities for the most part are very dedicated and caring. I’ve been lucky to have many great people help take care of me over the years. It’s the environment where people can get the help they need that bothers me. Riffe stated 40 percent of nursing home residents in Jamestown return home, but what about the 60 percent that never do? Kind of a high number I would say.

Community-based care won’t flourish in this state until it is put on a level playing field with institutions. Recent Department of Human Services statistics report nursing homes get about 80 percent of all Medicaid funds while community-based programs have to scrape by on only 20 percent. The system must be rebalanced to be fair to all. Don’t be expecting the long-term care officials in this state to be parting with their funds anytime soon though.

It is our role as citizens to become educated on all the options. It is time to begin thinking of alternative ways people receive care. Nursing homes could provide care received within their buildings to the community in their homes. We must begin to dialogue ways that care can be received so elderly and disabled individuals have choices. The time is now to begin working together, and not against one another to do what is right for the citizens of this state.

In 1999, the U.S. Supreme Court issued the Olmstead decision. The Olmstead decision requires states to provide care and services to their citizens in the most integrated setting. States now must be held accountable in giving citizens needing care, a real choice where they can get help. In most cases, not only is home- and community-based services much cheaper than institutional care, but the quality of life is far better! The times have slowly changed but much more work remains. I will keep continuing the fight for myself and others that want out of the institutions in this state. Only when true alternatives exist to institutional care will our society really be free.

Mark B. (The Nodakwheeler)