Posted by Michelle K. Wolf
When our son Danny was 3-4 years old, I logged a lot of hours in the waiting room of Cedars-Sinai while he received occupational therapy, physical and speech therapy. He then had a diagnosis of “global developmental delays” which was eventually changed to cerebral palsy/apraxia.
In those pre-smart phone days, we Moms (and an occasional Dad) didn’t have much else to do but talk to each other and often had impromptu support sessions, sharing the latest on therapies, medications, doctors, and of course, medical insurance. We were fortunate to have pretty good coverage through my husband’s aerospace employer, but the horror stories of those waiting room days stays with me.
There was one mom, a lovely British immigrant who had premature twins, and they both had pretty severe special needs. She couldn’t stand living with her husband any longer, and wanted out of the marriage, but had to stay married in order to have insurance for her boys. There were other parents who had Medi-Cal (California’s form of Medicaid) and wanted to get better-paying jobs, but worried that additional income would make them ineligible for Medi-Cal, and the jobs didn’t provide health insurance for dependents. Other self-employed parents couldn’t get insurance for their children since they had “pre-existing conditions” such as heart conditions.
Even with insurance, it was a constant battle to get the right services for Danny. My bulging paper files from those days are filled with appeal letters, written by us, by physical therapists, even doctors, asking for more physical therapy, an extension of speech therapy, or a referral to an out-of-network provider. In most cases, we were successful, and when we weren’t, we paid out of pocket, sometimes with help from grandparents.
Today’s Supreme Court ruling doesn’t solve all these problems for parents raising children with developmental delays, but it will make a difference. As the UCP Washington office wrote on their website, “The continuation of the Affordable Care Act (ACA) and its polices with ensure that children with pre-existing conditions and young adult dependent children will have access to private health insurance up to the age of 26.”
As the ACA is implemented over time, other benefits will kick in, such as the ability of adults with disabilities who have pre-existing conditions to purchase health insurance that meets their needs, starting in 2014.
The California Health Benefit Exchange will give individuals and small employers the ability to purchase affordable health care, also starting in 2014, and those services can include mental health, therapeutic, and other services.
One aspect of the ACA that hasn’t been discussed much is the “Community First” option of Medicaid that started in October, 2011 which gives bonus federal dollars to states that provide in-home aides to adults with disabilities in a community setting. to encourage them to move from a nursing facility/state hospital to the community and to achieve their maximum potential.
Even with all these benefits, however, there are many potential challenges with the ACA. As Rabbi Hershy Ten, president of Bikur Cholim Jewish Healthcare Foundation in Los Angeles told Jewish Journal reporter Julie Gruenbaum Fax, “Very few providers accept Medicaid, and there is no comprehensive list of those that do. And he said almost no specialists or surgeons accept Medicaid. Many doctors don’t even accept some nationally known private insurers, because the reimbursements are not worth their time.” (See the full article here)
Still, as I recall those waiting room heart-to-heart talks, having something will be better than nothing for families raising a child/teen with disabilities.
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June 22, 2012 | 1:46 am
Posted by Michelle K. Wolf
“It is not upon you to finish the work, but you are not free to ignore it.” (Mishna, Ethics, 2:21)
On March 7, 1949, my parents were married in Israel, an idealistic young American couple intent on helping to “build up the land” as the lyrics to a then-popular song intoned. The two had meet through the Labor Zionist movement in Pittsburgh and despite the misgivings of their respective families, they were determined to help make a difference at a crucial time in Jewish history. They lived and worked at Kibbutz Kfar Blum and Kibbutz Habonim and eventually moved back to the U.S. years before my sister and I were born (another story for another time).
And now, some 63 years later, I am co-chairing (with my good friend Judy Mark, and the parent of a teen with autism), a truly groundbreaking trip to Israel that gets underway on July 20th. Sponsored by the Jewish Federation of Greater Los Angeles, this is the first trip of its kind to bring together over 35 parents, high-level professionals and teens/young adults with autism to visit innovative residential and vocational programs for adults in Israel, with the express goal of coming back to Los Angeles and replicating some of those models locally.
Although a small country, Israelis have created a whole slew of really creative programs for adults with a range of developmental disabilities (and other disabilities too). In that “start-up” nation, good ideas are quickly put into action, and often without the red tape we encounter in the States. Although the trip is seven days, it is still going to be a major challenge for us to squeeze in visits to all the potential places we could see.
One of the places we will be visiting is Kishorit, an integrative community of 140 staff, volunteers and adults with mental/developmental disabilities which has numerous micro-enterprises on site including prize-winning dog breeding. Although technically not a “kibbutz’ in pure economic terms, it operates similar to kibbutizim with a communal dining room and each person making their own contribution for the good of the whole community.
Three years ago, we visited Kishorit as a family and I was awed and inspired by what I saw – a true community of residents and staff, living and working together for shared goals, and set in the most beautiful hillside, with flowers and shady trees every where you look. All that is missing is a pool, and that’s part of the future plans.
We will also visit the Kamah Association at Kibbutz Harduf, which offers a “community within a community” with 65 adults with developmental disabilities living among the typical residents of the kibbutz, with vocational training and work opportunities on site. Other visits include models of independent, supportive and inclusive residential options, along with many types of work training and employment. A special highlight will be meeting with representatives of Israeli Defense Forces who have created a new program to include Israelis with autism in the service.
When we return to Los Angeles, I’m sure we will be both exhausted and energized by what we have seen, and then we will turn to the hard work of building and expanding programs here, so that our children will have the same array of choices as their Israeli peers when they reach adulthood.
You can follow along our trip with daily blog posts at www.jewishla.org, and for a quick preview, read about our recent pre-trip bus tour of innovative programs in the San Fernando Valley
We are building together!
We are building together!
June 17, 2012 | 2:04 am
Posted by Michelle K. Wolf
Last week at the Father of the Year gala sponsored by the American Diabetes Association, Dr. Francine Kaufman of Medtronic/Children’s Hospital shared an important research finding. When she and her colleagues looked back at the records of children with diabetes, a key indicator of achieving control of blood sugar levels was the involvement of the Dad.“When Dads were actively involved in the medical care of their children, it really made a difference,” she said.
Further evidence of this comes from the Mormons. When I was helping to start a support group for Dads of kids with special needs at the LA Jewish Federation, we did some digging around to see which other groups were best supporting the Dads, and found ourselves looking way beyond the Jewish community, which unfortunately has very little in terms of formal support for fathers of children with special needs.
Turns out that the largest body of literature on this topic came from the Mormon church that doesn’t have paid full-time clergy at the local levels. Male members in particular are expected to perform their ecclesiastical duties on top of career and family responsibilities.
As a result of the need to keep all Dads actively engaged, the Mormon Church has a webpage on Dads and children with disabilities, filled with both commonsense and LDS specific advice: “Remember, learning how to raise a child with a disability is a process, not an event. You may need time to understand the demands and challenges of raising a child with a disability. At first you may have difficulty accepting that your child’s life may be different from what you planned and expected. “
In the secular world, there’s some great groups working on supporting special Dads, such as the Fathers Network, and Exceptional Parent magazine.In Los Angeles, there’s an excellent local group called DADA at http://dadadads.org/dada/.
With the Moms often more involved in the day-to-day logistics and details of their children and teens with special needs, the Dads involvement is often overlooked, but it may be just the critical factor needed for children reaching their maximum potential.
As the Fatherwork website says
“Fathers of special-needs children are ordinary men doing both ordinary and extraordinary things since parents of special-needs kids do the same things other parents do but usually have added burdens (and, often, added joys).”
June 7, 2012 | 11:58 pm
Posted by Michelle K. Wolf
When I watched the first segment of the new TV reality show “Push Girls” last Monday night on the Sundance Channel, I was taken in by the sheer chutzpah of the four young, sexy women profiled in the show, all of whom are paralyzed and use wheelchairs to get around, breaking myths and misconceptions with every roll of their chairs. And there’s a Jewish angle too, with one of the four women a Jewish Day School graduate (read more from The Ticket).
On a deeper personal level, I came away from the first episode feeling that the show would probably do more for disability awareness show than any previous TV show or movie, in the way it unblinkingly chronicles life in a wheelchair. When our son Danny with cerebral palsy first outgrew his kid’s stroller and we started using a larger stroller to get him around in public, I quickly discovered two things: one, getting around in a wheelchair, or pushing someone in a wheelchair is hard work. There’s been disabled signage that leads to nowhere, elevators that don’t work, and ramps that are too steep for starters.Too many street corners don’t have curb cuts, and even a small bump can bounce someone out of the chair. Even more troubling than the physical barriers, however, are the attitudinal barriers from those around us. People staring, trying to figure out “what is wrong with that boy”, or that soul-sapping look of pure pity. Worst of all is that feeling of being judged after the briefest of glances.
As described in the 1959 classic memoir, “Black Like Me” written by John Howard Griffin, a white journalist who had his skin medically darkened, this rush to judgement is unforgiving. Griffin wrote that ” When all the talk, all the propaganda was been cut away, the criterion is nothing but the color of skin. My experience proved that. They judged me by no quality. My skin was dark.”
I encourage everyone to watch “Push Girls” and judge for themselves.