Posted by Michelle K. Wolf
Dictionary.com states that the word “independence” can be defined as “freedom from the control, influence, support, aid, or the like, of others.”
As a parent of a 17 year-old with significant developmental disabilities, the word “independent” feels very elusive. With our next IEP (Individual Education Plan) meeting, we will begin to plan his “transition” out of high school and are getting ready to fill out the Limited Conservatorship paperwork needed for us to retain legal responsibility when he turns 18. How will our son Danny ever be independent when he needs help with almost every aspect of daily living? Will he be able to live safely and happily without us, even in a supportive and nurturing residential arrangement?
When he was younger, we had high hopes that all that was needed to ensure his eventual independence was one more therapy, perhaps a different, novel approach to his intellectual and physical challenges. Conventional physical and occupational therapy, Floor Time, Audio therapy, hippotherapy (that involves a horse, not a hippopotamus), you name it. We tried them all, and while many of the therapies and strategies were helpful, none of them were able to help him “catch up” to his peers. After a while, we stopped trying to run a race that was impossible to win, and learned to measure his progress solely against his own yardstick.
Just this year, Danny has shown remarkable progress in many areas, most profoundly in speech. When his space heater stopped working last night, he loudly announced, “I cold, I cold”! Upon hearing a song he likes, he demands that we add it to his “Nano” (Ipod), and as soon we hears about an upcoming party or simcha, he begins to plan out what he wants to do at the upcoming event “dance” accompanied by his own little dance move, or “eat cake”.
Last Friday, we stopped off for a snack at Starbucks after his swimming lesson. I knew he was tired, so I gave him the choice of going in or staying in the car. Up till now, he would just motion with his hands to stay in the car, or maybe say, “car”. He turned to me, and with full teenage attitude said very clearly, “Stay in the car”.
Independence Day is coming.
12.5.13 at 8:56 pm | The first national Leadership Institute on. . .
12.3.13 at 7:51 am |
11.22.13 at 6:05 pm | When all four Jewish movements come together to. . .
11.15.13 at 12:00 am | Self-Advocates and Family Members are furious by. . .
11.3.13 at 10:36 pm | Teachers-in-training want to include more. . .
10.27.13 at 10:12 pm | A group of parents in the 50s and 60s refused to. . .
April 20, 2012 | 3:17 pm
Posted by Michelle K. Wolf
Imagine spending your days as an aging adult in a beautiful camp-like environment with tall trees, flowers and bushes, nestled in the mountains. There are farm animals, a swimming pool and a wide variety of art and skill classes and opportunities to time with peers. Sounds like something out of a dream, no?
In fact, this idyllic 7.2 acre campus in the rural community of Shadow Hills at the base of the San Gabriel Mountains already exists, operated by Tierra del Sol, a non-profit agency started by a group of parents in 1971, who wanted community-based alternatives from the state hospital system for their adult children with developmental disabilities who were living at home, or nearby in group homes.
The adult program that my colleagues and I visited from Bet Tzedek Legal Services visited as part of the Transitions Project serves a wide swath of ages, from 18-80, although the younger participants are generally there for just a few years before moving onto supported or full employment. In the computer lab, each participant was working individually on their own machine, learning how to use the software, with an instructor from the Adult Education Division of LAUSD standing by to help out with an overhead projector and big screen, so participants can follow along while she provides instruction. (She and the other arts instructors have already been given pink slips by LAUSD due to state budget cuts, but more on that later).
I was especially impressed by the arts classes in drawing and ceramics, with a quiet, creative tone in each room, instructors who clearly knew their subject matter, and aides who made sure everyone including those with physical or more severe disabilities was able to participate. There were some artists who used the most vivid colors to express themselves when oral communication was difficult. Also impressive was the American Sign Language class for the older adults with developmental disabilities, giving them a mode of communication even if their hearing or speech were later impaired by age or dementia.
In addition to campus based learning, all participants are invited to participate in Tierra’s structured community volunteer programs at a variety of nearby community organizations, as well as helping to feed and take care of the chickens, rabbits, goats and sheep. It wasn’t too hard to close my eyes and imagine our son, Danny, enjoying his days there in just a few years, since he is already 17 years old.
Most of Tierra’s funding comes from governmental sources, primarily the state-funded Regional Centers, whose budgets have been hacked to bare bones by Sacramento. And those LAUSD cuts I mentioned earlier create an even bigger problem, with a new $150,000 budget shortfall that Tierra must now privately raise funds to fill.
The only problem for us is that Tierra del Sol is 30 miles away via some of the most heavily traveled freeways in the nation - also, Danny would want a place where he could hear some Israeli dance music, have Kabbalat Shabbat, and eat kosher hot dogs. This type of day program could be easily replicated under Jewish auspices, and has an outside revenue stream to boot. All it takes is some initial funding, a caring heart and lots of sunshine.
April 12, 2012 | 7:27 pm
Posted by Michelle K. Wolf
Last night, we attended a “third” seder hosted by the Vista Inspire Program at Vista del Mar for families who have children with special needs. Even though most of the child and teen participants of the Nes Gadol religious education program had attended seders on Friday and Saturday nights with friends and families, this was a third opportunity to sing a favorite song, eat some gluten-free Matzah and most importantly, hang out with their friends with special needs who understand them on a deep level. Like a bonus track on a CD (I’m dating myself here), this was a chance to linger a little longer.
Led by Rabbi Jackie Redner and Cantor Ken Jaffe, the service was well attended by 80 people, including parents, siblings, grandparents, volunteers and Vista del Mar board members, and covered all the “highlights” of the typical seder, with some special twists. Instead of just reading about the Exodus experience, the kids acted it out, with extra-dramatic flair provided by Ezra Fields-Meyer as the nasty Pharoah. Our Danny got to play the role of Nachson, who was the first brave soul to plunge into the Red Sea. Some kids ate a lot, some kids didn’t eat at all. The grape juice flowed as parents held ad hoc support sessions and the siblings got to feel a little less isolated in their unique situation. And at the end, there were a wide assortment of toys for Afikomen presents for all.
Thanks to Vista Del Mar, Elaine Hall, Rabbi Jackie and Cantor Ken for making our last seder of 2012 extra special.
April 6, 2012 | 1:32 pm
Posted by Michelle K. Wolf
For people with physical disabilities, and especially for those who use walkers and wheelchairs, the whole concept of “freedom” is closely connected to the ability to access wherever one wishes to go. Before President Bush signed the American Disabilities Act into law on July 26, 1990, no federal law prohibited private sector discrimination against people with disabilities and there was no legal mandate to provide for “public accommodations”. People with disabilities were routinely unable to enter many government buildings, houses of worships and even many hotels.
Since its passage, doors literally opened up, and now people with physical disabilities are able to work in office buildings, visit museums and travel by airplane.
One area that still needs more work is recreational activities, and there’s a specific new federal law pending from 2010 about making swimming pools, wading pools, and Jacuzzis accessible. Swim lessons and other aquatic programs at government-run programs will also need to be accessible. Pool operators have had two years to make changes, and the new law was supposed to have been implemented as of March of this year, but has now been pushed to May 15.
This change is long overdue, as many public pools have either architectural barriers, or attitudinal barriers. I can recall many years ago taking Danny to a LA City-operated pool, and the lifeguard there forcing us to take off his water wings, saying that no “toys” of any kind weren’t allowed; she said she had never heard of the ADA being applied to pools. Since then, we’ve been taking Danny to the family-run Beverlywood Swim Center for twice-weekly lessons because they’ve been offering 1:1 swim lessons for kids and adults with special needs for many years. In fact, Danny, like many others with cerebral palsy, loves the gravity-free water environment, and the most challenging part is getting Danny to get out of the pool when he’s done.
Many hotels, however, just don’t want to spend the $3,000 to $5000 needed to make the necessary changes (keep in mind that the law only applies to newly constructed and altered pools). There are even rumors circulating that some hotels would rather close down their pools rather then make them accessible.
Under the proposed law, large pools (more than 300 linear feet of pool wall) must have two accessible means of entry, with at least one being a pool lift or sloped entry; smaller pools are only required to have one accessible means of entry, provided that it is either a pool lift or a sloped entry. Wading pools need to have a sloped entry, which really helps the whole little kid demographic, not just those children with disabilities.
There are some tax credits available for hotels that make the changes through the Disabled Access Credit, plus all the costs are tax deductible. All in all, making the public and commercial pools available will benefit all, as universal access helps older folks and those with temporary injuries, as well as the disabled. It is time for the hotel industry to stop “lapping” behind and jump into the accessibility pool.
PS Join us at Nes Gadol and Jewish Life programs at Vista Del Mar for a 6th Night of Seder for families with children with autism and other special needs on Wednesday, April 11th from 5-7:30 pm at Vista Del Mar. $10 per person. RSVP to Naomi Salamon at 310 836-1223 ext 322 or email firstname.lastname@example.org
March 29, 2012 | 10:51 pm
Posted by Michelle K. Wolf
The big news today in special needs land was a new CDC report showing more than a 20 percent increase in autism rates. As reported in the NY Times, “The new report estimates that in 2008 one child in 88 received one of these diagnoses, known as autism spectrum disorders (ASD), by age 8, compared with about one in 110 two years earlier. The estimated rate in 2002 was about one in 155.”
And just how did the CDC determine that autism rates have increased? They used data from The Autism and Developmental Disabilities Monitoring (ADDM) Network, which reviews children’s evaluation records at 14 different sites to determine the presence of ASD symptoms at any time from birth through the end of the year when the child reaches age 8 years. ADDM focuses on children aged 8 years because a baseline study conducted by CDC demonstrated that this is the age of identified peak prevalence. Much of the increase is attributed to increased diagnoses of ASD among Latino and African-American children.
Of course, everyone is asking if this is just an issue of growing awareness, and a thus a larger number of children diagnosed with ASD, or is it indeed a “real” increase? This dilemma was summed up well by Dr. Thomas R. Insel, Director of the National Institute of Mental Health who wrote in his blog today: “Are more children affected or more detected? Does the increase reflect a growing problem, or do these new numbers reflect an improvement in our ability to diagnose and serve those affected?”
As my friend Judy Mark, Government Chair of the Autism Society of Los Angeles, says, “While it is important to ask why there is such a significant increase in the prevalence of autism, at this point it is more important to ask how we serve this enormous population—are we providing enough and the right kind of services? Are we providing enough early intervention (which, in California, has been cut back significantly in the past few years)? What are we going to do when these 8 year olds become adults?”
In my own professional work with both the Alzheimer’s Association and now the American Diabetes Association, I have learned that policy-makers and elected officials are often more focused on funding the cutting-edge research and possible cures for a disease instead of funding the nitty-gritty social services/supports so badly needed by any family who has a loved one with a chronic, complex condition.
What the increase in numbers really means is that more and more families either are, or will soon be touched by autism spectrum disorders. Consequently, this dramatic increase in numbers will impact government funding, medical providers and our own Jewish community. The need for inclusion, support and services has never been greater yet government funding is being cut on every level.
Closer to home, how can our Jewish community do more to help families with a child, teen or young adult with autism or other special needs? Empathy, not pity, is a great place to start. Putting yourself in someone else’s place is never easy. But we have a great guide. With Passover just days away, this is a good time to pull out the Haggadah, and think about why we hold a seder in the first place—to feel ourselves taking the exodus out of Egypt. As Cecil Roth comments in my favorite version of the Haggadah:
“The observance does not celebrate a long-past shadowy event of remote significance. It is an actuality. We do not celebrate the deliverance of our fathers alone, but our own freedom as well.”
March 27, 2012 | 12:04 am
Posted by Michelle K. Wolf
I spent the last few days on the east coast, hanging out with my daughter who is a college student at NYU and watching her perform in an off-off Broadway production of Shakespeare’s The Tempest in which she plays the role of Caliban the slave/monster. Both of the flights back and forth involved plane changes, and many hours of quiet time along, both on the ground and in the air.
After a lot of big events in my professional life, I purposely didn’t bring a laptop from work, and instead, used the time to catch up on reading on my Kindle, reading the NY Times and napping as much as possible. It was both liberating and odd to feel so removed from what I call the “Special Needs Land” of aides, therapists, and people staring at a kid who uses a walker, speaks oddly, and is given to whining and temper tantrums. I felt so anonymous, just another short, middle-aged lady who doesn’t get much of a second glance.
And then of course, I couldn’t help but notice the adult with Down syndrome on the second leg of a flight, the child with autism flapping in Washington Square Park, and the young man with a beard in a wheelchair in the airport terminal. I felt the desire to connect with all of them, but without my son with CP at my side, the impulse seemed out of place, and might be seen as more of an imposition than friendship.
I enjoyed my time “off” with my daughter and other east coast relatives, taking in the signs of an early spring in New York City, meandering along the High Line elevated park on Shabbat and eating delicious but overpriced Indian and Italian food. And I kept my eyes focused on the many stairs in Manhattan, not even looking around for the disabled signs that would lead to ramps or elevators, as I’ve learned to do over the years.
Today, I’ve re-joined the “Land of Special Needs”, talking to Danny’s aide at school about upcoming activities for Cesar Chavez Day, making an appointment with his speech therapist and given him a bath. It feels good to be back.
March 16, 2012 | 12:15 am
Posted by Michelle K. Wolf
Which comes first, the decision to disclose sensitive personal information, or the fear of stigma that may result from disclosure? This is a question of many people who feel at the margins of the Jewish community, whether for physical/mental illness, sexual orientation, poverty or special needs.
For many Jewish parents raising a child with less severe or “invisible” special needs, there is a strong, inherent urge not to share the child’s challenges with educators, camp directors and youth directors. After all, if the child can “pass” as a typical child, why turn the child’s diagnosis into a “label”, with all the stigma and difference that goes along with that appellation? With our community’s hyper focus on academic and extracurricular success, a Jewish kid who is even a little quirky or who has an artistic bent can feel left out, let alone someone who has a diagnosed learning disability.
In many cases, however, that lack of disclosure can boomerang, and result in the child acting up, getting into trouble, or even in the best case, often unable to keep up academically, and/or socially and the resulting feelings of low self-esteem.
At Matan’s recent inaugural Jewish special education national institute in New York City, 20 congregational school education directors from across the country came together to launch a 15-month program that will enable their schools to better accommodate children with special learning needs.
The two-day intensive program on March 11-12 featured a keynote address by our own Rabbi Bradley Artson, Dean of the Ziegler School of Rabbinic Studies at American Jewish University, and his 19-year-old son Jacob, who has Autism and communicates through typing. Matan staff presented on such topics as differentiated instruction, communicating with families and developing proper systems to understand various students’ needs.
Among these many topics, Meredith Polsky of Matan’s staff told me they discussed the issue of why parents don’t provide relevant information to congregational school directors, and how to change that. My sense is that parents are fearful of disclosure because they don’t see their congregational schools as truly welcoming students with special needs. Are there any photographs of kids with overt disabilities in their promotional literature? Do they encourage children with special needs to enroll, or do they fear that being known, as the “special ed” school will hurt their ability to enroll the more academically gifted students? Once other parents see my son Danny using his walker in any public space, I often become the “confessor” in whispered, anxious voices and hear the fear of stigma loud and clear.
Until a school or synagogue is seen as really welcoming those children with special learning needs, parents will be reluctant to share, but once the schools have established themselves an inclusive centers of Jewish study, it is incumbent upon the parents to disclose their children’s special needs.
One last note: I was very pleased to see such a nice line-up of major funders for this program and hope that other Jewish foundations and individuals will follow their lead: The Adler Family Innovation Fund of The Jewish Federation of Northern New Jersey, The Natan Fund, The Solelim Fund of UJA-Federation of New York and The Jewish Women’s Foundation of New York.
March 9, 2012 | 7:08 pm
Posted by Michelle K. Wolf
If you want to make things happen in Autism-land in Los Angeles (and by extension other developmental disabilities), the best go-to person is my longtime friend Judy Mark, the Governmental Relations Chair for Autism Society of Los Angeles. We met each other many years ago in high school while in BBYO, with her growing up in Downey and me in La Mirada. Although I’m far from a shrinking violet, I am an absolute wallflower compared to Judy, who was Regional President, and personified the word “leadership” in every way.
Flash forward a few decades, and Judy was working in Washington DC for national advocacy organizations representing immigrants and low‐income families while I was in Los Angeles, working in local government, various non-profits and The Jewish Federation.
After her son was diagnosed with autism, she and her family decided to move back to California, and through a mutual friend, she learned I was also raising a son with developmental disabilities, and we reconnected, with our kids now enrolled together in the Vista Inspire Project, doing theater and Judaica classes.
One day over lunch, Judy told me she just come back from visiting relatives in Israel, and while there, had toured two amazing special needs programs, Beit Issie Shapiro and Kibbutz Kishorit, both of which offer innovative approaches to supporting and helping people with developmental disabilities. The next time I was in Israel, we also had the chance to visit both places, and came away very impressed, wondering why we didn’t have similar programs back here in Los Angeles.
Now, in collaboration with the Jewish Federation of Los Angeles, many others will now have the opportunity to come to Israel with Judy and me this July 20-27, and visit not only these two wonderful places, but many others as well, such as Kibbutz Harduf, Center for Independent Living; Israel Unlimited (inclusion and advocacy); Aleh Negev (residential community for the most severely disabled); Israeli Defense Forces inclusion program; and JDC’s Supportive Community for People with Disabilities, plus many other amazing programs—whew!
Our study/exchange trip is for parents, professionals, and leaders in the disability rights community in Los Angeles to explore the country’s cutting-edge programs that provide vocational training, paid employment opportunities, and residential options for individuals with developmental disabilities. Our focus is on older teens and young adults, and when we get to Los Angeles, that’s when the real work begins, collaborating together to replicate some of those innovative models that are a good match for our community here.
Cost (not including airfare) - $2,000 per person, based on double occupancy. Includes hotel in the Tel Aviv area, most meals, on-the-ground transportation, and meetings.
If you are interested in coming along on this special trip, there’s an informational meeting this Tuesday, March 13 at 7 pm at the Jewish Federation of Greater Los Angeles, 6505 Wilshire Blvd. (near San Vicente. For security purposed, RSVP is required. For more information and to get on our email list, please contact Judy Mark at email@example.com