Posted by Michelle K. Wolf
“I’ve been knockin’ on the door that holds the throne
I’ve been lookin’ for the map that leads me home
I’ve been stumblin’ on good hearts turned to stone
The road of good intentions has gone dry as bone
We take care of our own.”
During this political season, we are hearing a lot about how big government should or shouldn’t be, and its appropriate role in our individual lives. For those most vulnerable among us, including the poor, the disabled and the frail elderly, the real question is: will the government be there for me when I need it the most?
As important as private charity donations are, the simple fact is that even when donors are generous as they often are in the Jewish community and other faith-based groups, the collective efforts of all that fundraising can’t come close to the real costs of taking care of people in need, especially so if there are long-term needs. According to the International Federation of Health Plans, the average cost per hospital stay in the United States was $15,734—would your synagogue or church want to foot that bill for every congregate who didn’t have health insurance or Medicare/Medicaid?
And those numbers are chicken feed when we start looking at long-term care.
My almost 90-year-old Dad took a bad fall last week, fractured his hip, had surgery and is now in rehab care for the next month or so at a skilled nursing facility. That service would cost around$230 a day out of pocket without his Medicare and supplemental coverage. He’s getting high-quality physical therapy five times a week, but with less coverage, he would be receiving far less sessions, even if the doctor recommended it for optimal recovery.
A lot of disability advocates are very worried about the Ryan (and now Romney) proposal to turn Medicare into a voucher system. Although Medicare is widely known as health insurance for those over age 65, federal law was changed in 1972 to include those with permanent disabilities. As David Lazarus reported in the LA Times last week on how the Ryan plan would work:
“People under 55 would receive a federal subsidy — a voucher — to buy health insurance once they reach the eligibility age, which Ryan would raise to 67.
That voucher would be used to buy either conventional Medicare coverage or a similar plan from, say, one of half a dozen private insurers. The amount of the voucher would be determined by the cost of the second-least-expensive plan available, which experts say would likely be private coverage that would not be as comprehensive as Medicare.”
The bottom line is that we are facing a potential situation of a lot less care for those who need it the most.
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August 20, 2012 | 10:33 pm
Posted by Michelle K. Wolf
During our recent LA Federation Special Needs Mission in Israel, Danny Katz from the Welfare of Ministry took great pains to point out that they were changing the name of his department from “Adults with Mental Retardation” to “Adults with Intellectual Disabilities”, so that Israel, in Katz’s words “could keep in alignment with the United Nations and the rest of the world.”
It’s high time for everyone else to follow his example. I can’t think of a better time to start than during the Hebrew month of Elul, which began on Aug. 19th, since this month is traditionally a time set aside for self-reflection and “tshuvah” or repentance before the High Holidays.
And I’m not just talking about jerks and people who don’t know better. From my point of view, way too many well-meaning, good-hearted people use the word “retarded” all the time to talk about the computer that isn’t working, a non-responsive customer service department, even a politician that they don’t much like. At Jewish non-profits, day schools, and even at synagogues, you don’t have to spend much time hanging out before the “r-word” pops up again and again.
Ironically, the term “mentally retarded” was first used in the 1950s to replace such derogatory terms as “feeble-minded” and “imbecile” and in the world of special education, there was a clear distinction between “educable retarded”, those students who can progress academically to a late elementary level and “trainable mentally retarded” referring to students whose IQs were lower but who were still capable of learning basic living skills in a sheltered setting, such as a group home.
The sting of hearing those terms applied to my child, then aged four, was deep and bitter. Only by sharing my heartache with other moms did I start to turn from sadness to anger, and finally settled somewhere between defiance and advocacy.
Disability advocates around the world have been trying to get the official diagnostic description of someone who learns at a slower rate than same-age peers changed for many years, and the professional world has pretty much agreed to change over to the term “intellectually disabled”. State and federal governments have or are in the process of officially making this change to the laws and statues that address legal or policy issues around this population, but the changeover hasn’t quite made it fully into popular culture, even with the best efforts of the Special Olympics initiative with their “spread the word to stop the word” campaign.
At this point in time, “retarded” has long outlived its usefulness as a diagnostic category and has instead become the go-to word for late-night comedians for an easy laugh. The “r-word” needs to go the way of other ugly ethnic/sexual orientation slurs, and disappear from our daily conversation.
We can all draw inspiration for this holy work from the words of Psalm 27, traditionally read daily during the month of Elul:
“Show me Your ways, O God,
And lead me on a just path”
August 11, 2012 | 3:59 pm
Posted by Michelle K. Wolf
My daughter likes to tease me that I can find something dealing with “special needs” in nearly everything I do—from picking movies that have a character with a disability to meeting a random person on the airplane who is a single mom raising two boys with autism. I’ve told her that the issues find me, not the other way around.
So there I was last Sunday night at the Pasadena City College for a “friends and family” event of the JPL Mars Science Lander (MSL) better known as “Curiosity”, taking on every anxiety-turning-into-joy moment with my husband, who is an engineer at JPL and had been part of the early stage planning for the mission, as well as part of the review team. Out there on Mars, some 150 million miles away from us, an incredibly complex and awesome set of landing maneuvers were about to take place, but what did I see seated in the row in front of ours?
An adorable blond-haired boy around the age of 3, squirming, whining and obviously up way past his bedtime. When he stood up, I saw the orthotic braces on his small feet, the kind Danny also wore when he was young, to help straighten his feet and give some arch support. Many kids with cerebral palsy (CP) end up wearing them for a least a few years. For us, the worst part was trying to keep Danny still while they applied the plaster to make a mold of his feet, and since he was growing, we had to do new molds every 6 months.
At about 30 minutes before touchdown, I leaned forward to whisper to the Mom, “I couldn’t help but notice that your son is wearing orthotics just like our son who is away at camp,” She sat up in her chair and whispered back, “Yes, he’s got a mild case of CP and we are doing everything we can,” She got a little teary as I told her that they were doing a great job, and that her son was going to be okay.”
We talked for a few minutes about physical therapy and the merits of swimming while the computer graphics on the big screen in the front of us showed what they thought was happening with the spacecraft. The JPL engineers on the video were munching down their peanuts for good luck while my husband looked at graphs on his laptop.
As each of the entry, landing and descent stages happened, the crowd in the auditorium roared its approval, while the little boy was out of the room with his Mom. They came in a few minutes before the 10:31 pm touchdown time, the boy asleep on his mother’s shoulder, sucking his thumb. I glanced at the Mom, and our eyes meet for just a second.
Then at 10:32 pm the screen showed Al Chen, a JPL engineer saying, “Touchdown confirmed.” Everyone stood up and applauded while the Mom remained seated with their sleeping son, who woke up a bit and smiled.