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.
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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 email@example.com