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.
May 29, 2012 | 11:51 pm
Posted by Michelle K. Wolf
One person’s idea of utopia can be someone else’s idea of a prison.
I was recently talking to a well-respected disability professional about the recent FRED conference to get people talking about creating new adult living opportunities at special needs farms and ranches, and musing how much Danny would enjoy being surrounded by friends 24/7, riding horses and helping out in some way when this professional got angry at the very concept. “I’ve spent my whole professional life trying to break down barriers for adults with developmental disabilities,” she said, “why would you want to put your son into a community that segregates people with disabilities?”
Other older parents who fought against the conventional wisdom of institutionalizing their young children with significant developmental disabilities often share this thinking. They had to fight the medical professionals and other authorities just to keep their child at home with the rest of the family and then later, fight even more battles to allow their children to attend public school, participate in camps and other social settings and be able to have a job. Why on earth would any parent even think about creating a living environment that wasn’t fully inclusive?
For me, I’d be absolutely delighted if Danny could eventually be part of a truly inclusive living situation if he were really accepted, and had a meaningful role to play, but given the reality of government funding levels and people’s willingness to spend extended time with someone who has significant challenges, I don’t see that happening any time soon.
I also know what won’t work for him. I don’t want him living alone with aides in an apartment just so we say he is living an “inclusive” life. I don’t want him home with us forever. It’s hard to visualize exactly where the best place would be for him and many of his teenage friends with similar needs.
What I do see, however, are parents coming together to create a whole new continuum of creative living arrangements. From the parents in Orange County who bought a hotel and are creating a dorm-like setting near the beach to the Golden Heart Ranch being developed, based on a model from the Netherlands, and looking forward, to the variety of innovative programs that will result from the Special Needs Study Mission to Israel this summer sponsored by the Los Angeles Jewish Federation. This Mission will include trips to various kibbutzim which have created wonderful new models that we visit, explore, and bring back to Los Angeles so that the hardest decision will be to chose between so many good options that strike a balance between the two poles of full inclusion and segregation.
May 20, 2012 | 12:13 pm
Posted by Michelle K. Wolf
As our son edges closer to the age of 18, and we begin to look down at the steep cliff of adulthood that awaits us after high school, it gets pretty scary. Peering down into a canyon of peaks and crevices from high above, it is very hard to picture the exact path we will travel.
The last two big events I attended gave me some guidance. The first conference, called ADVANCE LA, sponsored by The Help Group, was held at the AJU and was designed for professionals and parents of teens with special needs who have some academic skills, but who need help with the more “soft skills” such organization/time management, money management, and social interactions.
In the “Building Blocks for the Future” workshop presented by Amy-Jane Griffiths, PhD, a very systematic six-part approach to planning ahead was shared, beginning with the assessment of Strengths, Skills and Supports, and then moving onto on a dream or hope. My favorite take away was during the “Try It” stage (#5) when Dr. Griffiths showed an animated sketch of a dancing chicken, and said, “If you wanted to teach that chicken to dance, would you yell at it?” Of course not. You would throw a tasty morsel of corn at the first flick of its wings, and then keep building up from there.
The second peek over a closer edge for us personally took place in the Los Angeles County Superior Court on Friday afternoon, I went along with the Bet Tzedek Family Matters program to witness a group of 15 families from a Special Education High School having their day in court to obtain Limited DD Conservatorships for their significantly disabled teens, all close to 18 years old.
These low-income families had all received pro bono assistance from attorneys at O’Melveny and Myers, one of the largest and most prestigious law firms in the United States and beyond. One by one each family was called up to the bench with their pro bono attorney and with a separate attorney, called a PVP (“Probate Volunteer Panel”) to represent the rights of the client, which in this case was the young adult with developmental disabilities. All the PVPs also waived their fees today.
Judge Levanas welcomed everyone and said that “today is a celebration” of their transition into adulthood and that conservatorship represented a milestone for these young men and women as they moved into adulthood, as their parents (or other relatives) reaffirmed their commitment to their adult children to keep them safe and help the conservatee develop maximum self-reliance and independence.
Without these limited conservatorships, it can be very difficult for parents to participate in medical decisions (due to privacy laws), see confidential papers or have any control over signing contracts. Unfortunately, there are plenty of financial predators out there ready to “friend” an adult with developmental disabilities in return for them purchasing something they often don’t need, such as a rug cleaning machine for a house filled will hardwood floors.
Seeing these diverse families of many colors and configurations come forward before the judge and publicly re-committing to doing right by their young adult with developmental disabilities was inspiring, and helped me see the trailhead of our next journey.
May 15, 2012 | 10:59 am
Posted by Michelle K. Wolf
As certain as the grey, cloudy days of June are coming to us in Los Angeles, so too are the additional cuts proposed by Gov. Brown yesterday as part of the “May Revise” budget, which takes place annually one month after tax day. This time, the gap is $16 billion, a huge, abstract number that is very hard to wrap my brain around. But I have less difficulty in looking at the proposed major cuts which impact children, teens and adults with disabilities, and seeing a one-two-three combined punch:
1) Direct cuts to the Dept. of Developmental services which funds the 21 Regional Centers across the state = $50 million
2) Cuts to Medi-Cal providers, including hospitals and nursing homes, with many of those patients diagnosed with developmental disabilities=$1.2 billion
3) Reducing in-home service hours to the frail elderly and disabled by 7% across the board = $225 million
Taken together, these cuts are body blows to those with the greatest need—people who are poor and have severe disabilities, who often have multiple medical/disability conditions. Their families, and especially those family members who provide care 24/7 will bear the greatest burden, as they have fewer resources and more stress, which can create medical problems for the caregivers.
In this great golden state, why aren’t there more creative solutions to our budget woes than shoving the problems “downstream” to those who are the most vulnerable??? It just sucks.
May 10, 2012 | 10:26 am
Posted by Michelle K. Wolf
This is my sixth Mother’s Day without my Mom, Sheila Krotinger, and as much as I miss her terribly, I often think about all that she has missed. A lifelong, ardent Democrat and strong supporter of gender equality, she missed casting a vote for Hilliary Clinton for President four years ago, and then seeing the first black President sworn into office.
She missed using Facebook, which I think she would have enjoyed since she was one of the first of her same-age peers to get a computer, took classes, and eventually taught other seniors how to send emails (“They can never figure out the cursor” she would complain to me).
And of course, she has missed so many family milestones –the beautiful Bat Mitzvah of my niece in Sacramento, and then Danny’s Bar Mitzvah during Hanukkah, high school graduations, awards/honors, my nephew’s published books, my daughter performing in off-Broadway shows in New York City and meeting our new cat (we are very big on felines).
I was thinking about all of this when we experienced another milestone this week—Danny, age 17, walked independently for 15 steps or so, a feat he has not done for nine years when medication-induced ataxia set in, on top of his long-diagnosed cerebral palsy. Of course I immediately posted the news on Facebook, my husband videotaped it on his Iphone, and warm congratulations poured in from all over. My Facebook status update received 54 “likes” on this great news, the highest number any post of mine has ever received.
But without Mom to hear about it, the milestone wasn’t complete for me.
Some people say that after someone dies, their “spirit” lives on, but I have my doubts. For me, I would have to say that her voice lives on in my head, prodding me to action, warning me to keep my BS detector on high alert, and reminding me to put on sunscreen and wear a hat.
I love you Mom.