GCDD Seeks Reaction to NPR Reports

From Eric Jacobson, GCDD Executive Director It’s been a couple of weeks now since the latest NPR story in the investigative series “Home or Nursing Home” hit the radio airwaves.  I’ve spent some time with all the stories.  I’ve talked to our friends in the disability community including the Georgia Advocacy Office (thegao.org) and others supporting the Children’s Freedom Initiative (www.georgiacfi.org).  I encourage you to do the same and let us know your thoughts.  I think you’ll agree with me that, in their entirety, these stories highlight the vitality of the programming we stand behind…Money Follows The Person, Unlock the Waiting Lists!, and Real Communities.

As Executive Director of GCDD, I am particularly thankful that Joe Shapiro and the NPR editors put such time and energy into thoughtfully digging into these issues surrounding disability.  In his multi-part series, Shapiro told the stories of young and old, people who have severe disabilities and those for whom nursing home living is ridiculous…it’s simple bureaucracy keeping them there.

I’m talking about his December 2nd profile of Rosa Hendrix, 87, who bathes, feeds and dresses herself every day.  And makes her bed.  She doesn’t need to be in a nursing home, and we’re throwing money down the drain keeping her there.  She needs to be at home with proper community supports.

The fact that our society can’t provide enough of these supports in the proper framework is really preposterous and, frankly, makes me angry.

I feel similarly about Olivia Welter’s story.  She’s an Illinois resident who lost her eligibility for government assistance just because she turned 21.  Her parents can afford to care for her at home with help as long as the funding stays the same.  But, because of laws riddled with red tape and fine print, it won’t.  Nor can they avail themselves of less expensive care options (like an aide rather than a nurse), because, by Illinois law, an aide can't give Olivia her medicines. They also can't do the emergency care, like quickly replacing the breathing tube that keeps her alive if it pops out.

But amidst this litany of frustration, there are bright spots and Shapiro profiled those nicely.  There’s the Lois Curtis story. She was a plaintiff in the landmark 1999 Olmstead Decision, in which the Supreme Court stated a person can’t be held in a nursing home against their will when care with the proper community supports is available.  Today, Lois lives a prosperous and successful life in the community and is becoming a sought-after folk artist.

Another good news story is Mathew Harp, a 22-year old who successfully moved to a home situation from a nursing home and has now been giving back, recently speaking to a group of Georgia parents whose children are living in nursing facilities. You can listen to Mathew’s speech which was published in Making A Difference magazine and was part of a presentation by the Children’s Freedom Initiative, a collaborative effort by GCDD and our disability partners to find every child in the state living in a nursing home and show their parents alternatives to nursing-home placement.

And, believe me, nursing homes are no place for young people.  Shapiro used Michelle Fridley’s story to illustrate the statistic:  young people ages 31 to 64 now make up 14 percent of the nursing home population.  Michelle has fought to stay OUT of nursing homes since an accident 10 years ago on her way to a baby shower left her a quadriplegic.

The series also offers a bird’s eye view of the fight for disability rights with a great timeline of milestones in long term care policy. Shapiro profiles Katie Beckett and Sue Jamieson who has spent her career fighting for disability rights.  The recent enormous victory for disability rights with the Department of Justice settlement with Georgia, which outlines specific deliverables to make good on the Olmstead Decision, is also a huge step forward.

So we have made progress.  But we also have far to go.

We at the Georgia Council for Developmental Disabilities - along with our disability partners - will stay the course with our priorities of Real Communities, Unlock The Waiting Lists! and Money Follows The Person.  We’d like to know your thoughts.  Take some time to read and review the stories in this valuable NPR series, then give us your thoughts. Use anecdotes.  Give us stories.  Offer up tips and good news.  Let’s work together to effect change because change really does begin with participation by each one of us.