January 23, 2012 | 12:13 am

Rep. Giffords, Health Insurance and Inclusion

Posted by Michelle K. Wolf

Like many of you, I have been closely following Rep. Gabby Giffords’ step-by-step recovery from a bullet to her head as part of a horrific assassination attempt last year. Watching the recent video in which she announced her resignation from Congress was a reminder of how far she has come, but also visibly showed that she still has a very long road to recovery.

I’ve read excerpts of the book, Gabby, written by Giffords and her husband, Mark Kelly, and they go into detail about the rigorous and comprehensive speech therapy and physical therapy she has received, supervised by Kelly and Giffords’ mother. Along with these two personal advocates, Giffords has been helped by the highest-level team of specialists, therapists and caregivers. As a member of Congress, she also had access to some of the best medical insurance available in the United States, as well as private resources to supplement what insurance didn’t cover.

What happens to most traumatic brain injury (TBI) victims? For many adults with inadequate or no insurance, their ability to access therapy after the initial acute phase is often curtailed or severely limited. As one patient-advocacy Web site says:

“At the initial stages of an injury, patients are treated without much regard for insurance coverage. It is after the patient has been stabilized that the type of insurance coverage starts to play a role.”

I have met more than one family who is caring for an adult family member with TBI at home, and the results are often devastating. Both the patient with TBI and the family caregiver are unable to work, causing financial and emotional stress for the rest of the family. After the first year or so, many patients can’t get funding for the additional speech and physical therapy they require, and there are often setbacks, such as seizures, along the way. Services for adults with TBI are piecemeal and fragmented, and determining eligibility, filling out all the paperwork and then fighting to keep services going can contribute to the frustration and despair of many family caregivers.

With the current circus-like atmosphere of the Republican primaries, and all the fear-mongering over the Affordable Care Act (that’s the real name of national Health Care Insurance, not “Obamacare”), I wonder if this issue, which according to the CDC impacts 1.7 million Americans every year, will ever be discussed in a rational and meaningful way. After all, can anyone be certain they won’t, at some time, have a family member who is the victim of a catastrophic car accident, a near drowning incident or a bad fall?

On a more positive note, I want to share what the Los Angeles Jewish community is doing as part of national Jewish Disability Awareness Month in February. Under the banner of “Inclusion Awareness Month” (I.AM.) The Jewish Federation of Greater Los Angeles is coordinating community-wide events and programs that target both professionals working with families with special needs and the general community, with the goal for each to create an overall inclusive community. Check out the long and impressive list at jewishla.org/pages/inclusion-awareness-month-iam, and make plans to attend as many events as possible. Even better, share the information with your friends who haven’t yet been personally touched by disability.

January 14, 2012 | 11:47 pm

MLK, Civil Rights & Denying a Kidney Transplant

Posted by Michelle K. Wolf

Injustice anywhere is a threat to justice everywhere. 

~Rev. Martin Luther King Jr.

As I was thinking about how exactly to make a connection between Martin Luther King Jr. and disabilities/special needs, along came a blog post from Ellen Seidman over at Love That Max, quoting from blogger Chrissy Rivera about her daughter, Amelia, a 2-year with a rare genetic condition whose doctor at Children’s Hospital Philadelphia (CHOP) has recommended that her daughter not receive a kidney transplant largely because Amelia is “mentally retarded.” You can read Chrissy’s post here.

Without this kidney transplant, Amelia will die within six months to a year.

It’s unbelievable that in 2012, this could happen, and yet cognitive ability is apparently part of the standard criteria in deciding who gets (or doesn’t get) an organ donation. (And in Amelia’s case, the family is willing to use a family donor, so the issue isn’t just the scarcity of viable organs).

It reminds me of that ugly chapter in our American history when southern states were allowed to count slaves as 3/5 persons for purposes of apportionment in Congress (even though the slaves could not, of course, vote.). In CHOP’s approach, some people clearly “count” more than others.

What would MLK have done? Organized a protest in front of CHOP maybe, or called on the editor of the Philadelphia Inquirer to pen a strongly-worded editorial condemning this denial?

Thanks to the power of social media, there’s been a huge response to Chrissy’s post in just a short time and over 9,000 people have signed a petition over at change.org, I just saw that emails are going directly the Board of Trustees at CHOP to encourage them to reconsider this decision. (I don’t envy their PR director this evening.) Will another Children’s Hospital consider taking on this case?

As I type this, our teenage son who also received a “mentally retarded” label at one point is flipping through his favorite Hebrew song videos on his new Ipad. Who really knows what little Amelia will or won’t be able to do as she gets older, if only the medical establishment will give her a second chance.

And what should everyone else be doing to help Amelia and her family? Martin Luther King Jr. said it best:
“Human progress is neither automatic nor inevitable… Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals. “

Amen.

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January 8, 2012 | 3:17 am

For your consideration

Posted by Michelle K. Wolf

With the entertainment awards season now in full swing, I challenge the motion picture industry to show us a signficantly developementally disabled teen or older adult who is not just getting by, but thriving with friends, a job, and more.  The Los Angeles-based screenwriters wouldn’t have to travel far to find a non-verbal autistic teen who can’t speak orally, but can type out college-level essays on love, life and loneliness. Or the young adult with CP who is living with a roomate, working in regular employment and helping to lead davening at a local shul.

For many general movie-goers, the “special needs” film that comes to mind is “Rainman” from 1988 in which Dustin Hoffman recieved an Oscar for his role of Raymond Babbit, the older brother of Charlie Babbit played by Tom Cruise. For those of you who can’t recall the details, or never saw it, Charlie is a selfish LA hustler who has been estranged from his Dad since his teen years and when he learns that his deceased Dad left a $3 million trust fund for some guy named Raymond, Charlie makes a beeline to the Walbrook Institute in Ohio where Raymond, his previously unknown brother with autism has been living since childhood, and kidnaps him. The duo travel by car back to LA, sharing many adventures, fights and tender moments along the way. The plot is tightly focused on relationship between the two brothers, and ends with Charlie as a better human being and Raymond on a train headed back to Walbrook Institute.

But a lot has changed (mostly for the positive) since 1988. Most of the institutions exemplified by Walbrook have long been shuttered, and today adults with developmental disabilities either live in group homes, in supported independent living or are still living with their aging parents (more on that later). The shame and stigma attached to having siblings with severe disabilities has been greatly eased (take for example the Santorum kids all sporting photo buttons of the their three-year-old sister who has a rare genetic disorder, Trisomy 18). And people with disabilities are living longer than ever, thanks to medical advances.

If Hollywood can remake such classics as King Kong, The Fly and Casino Royale, why not do the same type of treatment for Rainman, in which the older relative with development disabilities (DD) is living independently and successfully?

PS I have started a part-time position with Bet Tzedek Legal Services as Transitions Coordinator, a new, three-year grant-funded initiative by the UniHealth Foundation which will provide coordinated, holistic services to middle-aged adults with developmental disabilities who are entering older adulthood. Currently, 84% of DD families served by Bet Tzedek are being cared for their parents, and 77% of caregivers are over the age of 50.

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