Posted by Michelle K. Wolf
Sorry but this post isn’t about that type of passion (although that’s important too and is covered well by many other JewishJournal.com bloggers). The type of passion I’m writing about here is the need for parents to start actively engaging in the political process on behalf of their children with developmental disabilities to ensure that the needed services are funded so our kids can live full, meaningful lives with as much independence as possible.
At a recent Autism Society of Los Angeles conference held at Vista Del Mar, speaker after speaker exhorted the parents and professionals in the room to re-engage now, at this critical time when both the State of California and the Federal government are pondering how much and what to cut in terms of social services and provider reimbursement. At the heart of the debate in California is the key question: Will the landmark Lanterman Act still exist?
The Lanterman Developmental Disabilities Services Act, known as the “Lanterman Act”, is a key piece of legislation that was first passed in 1969 under the leadership of Assemblyman Frank. D. Lanterman, who represented the La Canada/Glendale/Pasadena area (a Republican and self-described fiscal conservative to boot).
There’s a great back story: a group of like-minded parents who refused to put their children with mental retardation into state hospitals (which was the conventional medical advice of the day) joined together and advocated strongly for a system that would help them keep their kids at home. Thanks to the persistence of this group of parents, children with developmental disabilities were finally able to receive state-funded treatments and care at home. The Lanterman Act—later amended several times—“creates a system where each person with a disability is empowered to participate in choices about where and how they live, learn, work and play. Each person with a developmental disability has an Individual Program Plan (IPP) which specifies the services and supports the person will receive, while also considering the individual’s needs, desires and objectives.” –from http://keepingthelantermanpromise.net/
(For a great documentary on this subject of those trailblazing parents, go to http://www.lanterman.org/uploads/videos/video_werehere.html)
Liz Spencer, a services coordinator at the Westside Regional Center said at the conference, “The parents in the 60s fought like hell and gave us the Lanterman Act. If it goes away, it is our own damn fault (she has a 23 year-old with Downs Syndrome).”
Valerie Vanaman, the well-regarded attorney for parents for any cases involving special education, disability issues and rights, also presented at the conference, and warned everyone, “Lawyers can’t protect the Lanterman Act—the Legislature created it and it could disappear tomorrow.”
Speaker after speaker gave us an action plan:
1) Learn what is happening in Sacramento and Washington DC
2) Get on email action network lists, and respond
3) Testify at hearings in Sacramento and in Los Angeles
4) Show up at rallies
5) Get on the boards of your local Regional Center
Like the parents who came before us, it is up to us to join forces and not allow the great gift we have been given to be discarded.
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September 16, 2011 | 1:24 am
Posted by Michelle K. Wolf
Our daughter Rachel was telling me about a new friend at college who gets upset at every little thing, from an email that doesn’t get answered to losing a favorite scarf. Rachel was telling her that our family tends not to be upset by little things, mostly due to her younger brother Danny having special needs.
I had to laugh when she said that, since our home has its own share of drama from stopped-up toilets to missing cats, but it is true that having a family member with developmental disabilities gives us a different outlook than many. Dealing with chaos has its privileges. We are used to the last-minute crisis, can handle a vast array of minor medical issues and keep on hand the appropriate cleaning materials for all types of messes. Most importantly, we have learned how to improvise.
When Rachel was in Shalhevet Middle School, the girls were all brought together for some type of group counseling program and the question was posed, “What really upsets your Mom?” Many of the budding teens talked about such everyday annoyances as red wine being spilled on white rugs (who would ever own such a thing?) and finding a tear in a favorite dress while heading out of the house. I think Rachel talked about our car breaking down at night just after we had dropped off my husband at LAX for a business trip (to France no less). Danny started to cry along with the moaning engine so I pulled into a nearby gas station, trying to stay calm and figure out what the hell to do. Just as I was getting ready to call a friend for help, a taxi driver with no passengers pulled up to get some gasoline. The three of us jumped into the van and went home.
As we like to say—“Don’t worry—it could always be worse.”
For Los Angeles-area friends with special needs kids and teens—Come to the Kehillah Kedosha OurSpace Gathering this Sunday, September 18th at 2:30 in Gates Canyon Park/Brandon’s Village in Calabasas. RSVP to email@example.com
September 9, 2011 | 12:02 am
Posted by Michelle K. Wolf
A lot of people get upset about being subjected to an intrusive pat-down from TSA officers as part of airplane security if something unusual is detected during screening with advanced imaging technology (AIT)” or if they opt out of screening by AIT or walk-through metal detectors. As my 20-year-old daughter likes to say, “Welcome to my world!”
When the new security regulations came out post-9/11, I found myself subject to a full pat-down if I wanted to stay with our son Danny, who has cerebral palsy and other special needs and uses a large stroller in walking any long distances. Because he can’t walk independently through the metal detector, he is always subject to a pat-down, and since he would go into a full tantrum if left alone with a stranger, so am I. For the most part, the TSA officers are kind, and don’t subject Danny to much more than a friendly squeeze on his arms, back and legs, but I get the full treatment, standing around barefoot in an eagle-arm stance, blushing and trying not to engage in any eye contact with other passersby. The female officers doing the pat-down are always very professional, and tell me exactly what they are doing, trying to get it over as soon as possible. They don’t like it any more than I do.
And then there is always a flurry of activity around the liquid nutritional supplements that we bring along for Danny to drink; sometimes they are opened up and given a quick chemical test. I have to remember to tell the officers all the different places I’ve packed them away, so there’s no surprises in the x-ray machine. “We found two more bottles,” one overly energetic young female officer once yelled out.
But when we fly in or out of Israel, neither Danny nor I have to be subjected to this embarrassing ritual. We chat in English with the security guards who ask us about where we grew up in the United States and where we went to religious school. They glance at his many bottles of turbo-charged Boost or Ensure and send us on our way with a quick “Shalom”.
Believe me, I fully understand the need for security given the realities of our post 9/11 environment, but there’s got to be a better way for everyone concerned. Some critics say that the current security system spends too much time and money trying to find weapons instead of ferreting out terrorists. As a backgrounder report from the Council on Foreign Relations says, “One approach, called behavior pattern recognition (BPR), uses behavior clues to identify potential terrorists during passenger screening. Rafi Ron, former director of security at Tel Aviv’s Ben Gurion airport and now a security consultant working with the TSA to implement BPR programs at U.S. airports, says if BPR is widely implemented it will “add a very important security layer to our aviation [system].”
In the meantime, I prep Danny and myself before each airline trip. “The nice man is going to do a quick check, check, check,” I say to him, as I tickle him in the tummy. On our most recent trip east, Danny was even given a TSA sticker at the Philadelphia airport as a reward for staying calm during the now-common ritual. As for me, I am still working on not blushing.
September 2, 2011 | 8:45 am
Posted by Michelle K. Wolf
As we prepped for our annual trip east to visit relatives and take our older daughter to her dorms at NYU, we started tracking Hurricane Irene, and hoped she would stay far away from us in Philly and suburban New Jersey. But there was no escaping the wide swath of wind and rain. First our flight out of LAX on Thursday Aug. 25th was delayed almost 5 hours on the ground, and Danny, our 16-year-old with significant multiple disabilities was in no mood to wait. We kept throwing vanilla Frappucinos at him to keep him happy and stressed the need for him to stay “flexible”—something we are always talking about since Danny craves structure and sameness.
After we finally arrived at Philadelphia International Airport, the air was heavy with humidity and anxiety. We had planned to stay in Philly thru Shabbat and then drive to New Jersey on Sunday morning to get our daughter in her dorms in Manhattan on Monday. But our sister-in-law called, telling us to get to NJ as soon as possible, ahead of Irene.
We threw our luggage in the car and arrived well before Shabbat. Once there, we helped move lawn furniture inside an outside shed and located flashlights, and candles. Saturday morning was rainy but not too windy, and we stayed mostly inside, watching CNN and assorted movies. By nightfall, however, the rain intensified and my husband took the kids on a “hurricane walk”. We told Danny that “Irene was coming” and for awhile, he thought it meant another houseguest. Then we explained it was going to be very noisy with a lot of wind and rain during the night, and indeed Irene made quite a racket between 2-4 am with tree branches twisting and groaning in the wee hours. We woke on Sunday to very minimal damage—a downed screen and some bushes and plants askew but when we drove to the grocery store, there were huge downed trees blocking the road causing all manner of detours. Sunday was a quiet day with light rain and some wind and we thought we were done.
Then, at 10 pm Sunday night, the power clicked off. No electricity meant Danny couldn’t watch his beloved DVDs so we got creative and taught him to sing a new version of “Goodnight Irene…we have no electricity”. We went to a diner for lunch and tried to help our brother and sister in law salvage their two freezers worth of expensive kosher meat by taking it over to other relatives who still had power. Danny was starting to enjoy the evenings with candles and flashlights. Monday morning dawned and with it, every smoke alarm going off simultaneously, creating a shrill racket. Everyone else was holding their hands over their ears but Danny stayed in bed, rolling around in his blankets, completely calm and happy.
Finally at 3 am on Tuesday morning, the power was magically restored, and we all trooped into Manhattan on a beautiful sunny day. After our daughter was moved into her dorms, it was time to say good-bye, and that’s when Danny had his meltdown. Flexibility can only take you so far.
August 24, 2011 | 9:59 pm
Posted Sarah Blitzstein, MA, MSW, Director, HaMercaz
There’s something amazing about summertime. Spontaneous trips with the family to the beach, the children’s museum, the amusement park. There’s no homework, schedules are loose and everyone is more laid back. You pile into the car, pack leftovers into Tupperware and head off into the hot summer sun. At the end of the day, everyone enjoys an ice-cream and the kids fall asleep on the way home.
Sounds like the perfect summer day, but for many families raising children with special needs,. ‘spontaneity’ and ‘loose schedules’ are more curse than blessing. Kids with special needs often love routine and schedule and spontaneous trips aren’t on their schedule. Trips to the park are difficult because your son with autism wants go up and down the slide for hours, which is hard when other children are waiting in line. A child with sensory issues may hate the feeling of sand on his body. And you may have other children as well—siblings who want to (and can) run around the playground, wait their turns, climb the jungle gym unaided. Other moms and dads seem to be socializing with one another. But you can’t because you need to watch your child’s every move. And sometimes that includes apologizing for your child’s behavior, knowing they are thinking ‘why doesn’t she discipline him?’ or ‘what kind of a dad hovers that way??’
Are you looking for a different experience? One where you might say, ‘This is a place where my children can feel safe—and I can relax with other moms’? Where you might say, ‘This is the only place where I don’t feel my child is weird—he’s just one of the group’? Where another parent might say to you, ‘Don’t worry, this is a place where you never have to feel embarrassed’? This is what families who attend HaMercaz playdays tell us…over and over and over. HaMercaz is the one-stop resource for families with children with special needs, a program of the Jewish Federation and Jewish Family Service and eight other Jewish agencies. Our multigenerational family events are held 5-7 times a year. And the events are for the whole family—you and all your children, grandparents, cousins, aunts and uncles. Anyone you want to bring. Each family event is held in a setting reserved especially for HaMercaz families—the Zimmer Museum, the Noah’s Ark Exhibit at the Skirball Cultural Center, parks, equestrian centers. These family events are wonderful ways for families with children with a variety of special needs to meet, play and get to know each other. As one of our moms told us, ‘I get to play, too—with other moms!’
On September 15 HaMercaz is hosting a family play date at Noah’s Ark at the Skirball Cultural Center (visit www.Hamercaz.org for more information). If you live in Los Angeles and have a child or grandchild with special needs, you’re invited to join us. We’d love to have you join us; at the end of the day, everyone leaves with a goody bag and a smile on their face. It may not be ice cream, but it’s just as sweet.
August 19, 2011 | 7:35 pm
Posted by Michelle K. Wolf
People buy health insurance (or their employers purchase for them) for just one reason –to get help when they are sick. Why else should you (or your employer) pay monthly premiums? For people who are generally healthy or have common medical conditions, health insurance can work pretty well, taking care of, for example, ear infections in little ones, physical therapy for bad backs in middle-aged folks and even heart problems for grandparents. But for parents raising a child or teen with developmental disabilities or other complex medical conditions, it feels all too often that you are on the frontlines of an epic battle.
According to Marty Omoto, Director of the California Disability Community Action Network, there’s a very important piece of pending legislation in Sacramento authored by Senate President Pro Tem Darrell Steinberg (Democrat - Sacramento, 6th State Senate District) that would require health managed care plans and health insurance plans to provide behavioral health treatment for persons with autism spectrum disorders as a covered benefit.
This bill, SB 770, would mandate coverage of behavioral health treatment, such as Applied Behavioral Analysis (ABA) and other intensive early intervention therapy, for thousands of people with autism spectrum disorders. The bill expands the list of qualified autism providers to include any licensed or nationally certified professional, or any provider of these services approved as a vendor by one of California’s 21 non-profit regional centers which contract with the Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities.
Sponsors of the bill include Autism Speaks, Alliance of California Autism Organizations, Special Needs Network, and The Help Group.
Steinberg is hoping to see SB 770 passed before the Legislature adjourns for their year on September 9th but the bill is expected to face fierce opposition from managed health care plans, who in the past have said that behavioral health treatments for autism should be provided by school districts and the state-funded regional centers. Naturally, both the school districts and regional centers expect for private insurance to pick up the tab. In the middle of this high stakes game of “eeny, meeny, miny, moe” are the parents of children diagnosed with Autism Spectrum Disorders, just trying to get funding for their child.
I have collected my own share of gray hairs dealing with our various health insurance companies, and the situation was much worse when we opted for less expensive HMO coverage (we have since bit the bullet and moved over to the much more expensive PPO coverage). One particularly bizarre situation was when Danny was around 9 years around and developed ataxia, a condition that threw him off balance and stopped him from being able to walk independently. He had outgrown a toddler’s stroller and needed a very expensive bigger type-stroller and the government-funded California Children Services would pay for it completely but only if we got a denial letter from our private insurance company. I have a distinct memory of sitting in my car on roof of the LA Jewish Federation’s parking lot, crying into my cell, “Please, we desperately need you to deny us in writing”.
Although this bill doesn’t address that particular issue, it sends an important message that health insurance companies have to make it easier for families raising children with special needs and developmental disabilities to get the services they need to treat their medical conditions.
It’s clear that our side could use some bigger guns, like SB 770.
August 11, 2011 | 11:25 pm
Posted by Michelle K. Wolf
I have always liked monkeys. As a child, my “lovey” wasn’t a bear or a doll – it was a sock monkey I named “Judy” after the chimpanzee in my favorite TV show, “Daktari”, which was a short-lived television series in the late 1960s about a veterinarian who ran an animal study center in Africa and tried to protect the wild animals from nasty poachers and other bad guys. When we go to the zoo, I always insist on a visit to the chimpanzee enclosure, and love to watch them play and swing around.
So with that said, it isn’t too surprising that I wanted to see the latest Planet of the Apes movie, even if the performance capture special effects were supposedly more complex than the plot. Movieweb.com sums up the plot as” …an origin story in the truest sense of the term. Set in present day San Francisco, the film is a reality-based cautionary tale, a science fiction/science fact blend, where man’s own experiments with genetic engineering lead to the development of intelligence in apes and the onset of a war for supremacy.”
But from my perspective, the movie had a lot to say about the challenges of raising a child (okay, in this case a chimp) with special needs as well as caregiving for an elderly parent. The main character played by James Franco is a biomedical researcher raising an orphaned chimp from infancy and is also taking care of his aging Dad while at the same time trying to find a cure for Alzheimer’s disease (talk about your sandwich generation).
There are a few key scenes that really resonated for me as a parent of a teen with developmental disabilities. One was when young Caesar, the super smart alpha chimp, is looking out of his attic window at the neighborhood kids riding their bikes and having fun, and he stares out at them with such a look of longing and desire. Caesar sneaks out to have some fun too, and is nearly clubbed to death by a nasty neighborhood dad. At another point in the plot, Caesar is trying to figure out his identity with his adopted human family—is he an animal, a pet or a human? Caesar poignantly signs, “ What is Caesar?”
People often ask me what Danny thinks about having disabilities, but due to his limited speech abilities, plus his obsessing on certain subjects, which is currently the “SuperFriends” cartoon boxed set with the “Legion of Doom”, I don’t really know what he thinks about it. Every now and again, however, I do see that same sense of longing and desire to be part of something that he can’t join in. Sure hope he doesn’t start a revolution about it.
August 2, 2011 | 5:36 pm
Posted by Michelle K. Wolf
Our family does many things differently from other families.
This weekend, my husband (who used the money he earned as a Torah reader in his teens to pay for flying lessons), flew the four of us to the Gilroy Garlic Festival and then to Sacramento in a rented 4-seater Cessna182 RG for a weekend of fun in the sun (not to mention all that garlic). Even after 22 years of flying with my husband, I still find myself reciting the Shema under my breath while sitting in what is basically a Mini Cooper with wings, but not Danny. He now loves flying in a “small plane” and craning his neck to see, as he calls it the “view LA” especially at night, when the carpet of lights twinkle from the mountains to the sea.
As I’ve mentioned in other posts, when Danny was younger, he was very challenged with sensory integration disorder The slightest noise—a can opener, an espresso machine, even hearing a shofar blow, would send him into a crying jag. In his first few trips in the small plane, he fussed and yelled and refused to wear the headphones which help to cancel out the very loud engine noise. We weren’t sure he was ever doing to be able to adjust to the sensory issues inherently present in small plane flying. But, then as he worked with an occupational therapist, and we did a “brushing” program with a non-scratching surgical brush and also deep joint compressions, he gradually become more tolerant of all types of sounds. In fact, Danny now seeks out the speakers at a concert, getting in as close as possible.
In preparation for a three-week western states “road trip” in 2005, my husband decided to take Danny a few short trips, just the two of them, so Danny could gradually acclimate to the whole routine, including the pre-flight “run up” in which the engine is tested and is incredibly noisy.
We ended up logging slightly over 21 hours of actual airtime, flying 3,000 miles in total. Our route took us from Southern California to the Grand Canyon in Arizona; Bryce Canyon in Utah; Santa Fe; New Mexico; and then north to Salt Lake City; up to Boise, Idaho; west to Gold Beach on the rugged Oregon coastline and finally to Sacramento for an old-fashioned July 4th complete with fireworks with my sister and her family before coming home to Los Angeles. We had varied experiences at different airports along the way—we landed our plane at small strips in the middle of the Arizona desert with sagebrush tumbling over the runway and at fancy private jet operators where the Cessna was like a broken down 1990 Honda being parked next to a BMW at the Beverly Hilton Hotel.
After that vacation, Danny truly earned his “wings” —in fact we now use the reward of a future trip in small plane to encourage positive behavior. Like I said, we just do things differently.
July 26, 2011 | 12:44 am
Posted by Michelle K. Wolf
“We spend our whole lives wishing. We weren’t so freaking’ strange.
They make us feel the pain. But it’s they who need to change”
—Gingy (The Gingerbread Man) in Shrek, the Musical
This week we are celebrating the 21st anniversary of the American Disabilities Act (ADA), the landmark Federal civil rights legislation signed into law by President George H. W. Bush in 1990. It was quite expansive in what it covered and the overall goal was to make American society more accessible to persons with disabilities in many different ways – employment, public services, public accommodations, telecommunications and protection from retaliation for persons who assert their rights. It was, and is a very big deal for people with disabilities, especially in the area of physical accesibilities in which the design of government buildings literally locked people out from having a voice.
In religious life too, the ADA has had a huge impact because as synagogues and churches have been renovated or built new, they have generally followed ADA regulations even though not mandated to do so, and added in ramps, elevators and disabled parking spaces.
However, there is still much to be done in taking down the many social and financial barriers for people with disabilities, such as ensuring that adults with disabilities have full access to community-based services and supports, as well as meaningful employment opportunities.
For us personally, the ADA means that we can easily take Danny out with his stroller or walker into every part of the community and enjoy all that is available, from the Hollywood Bowl (although those elevators really need to be enlarged and modernized) to The Empire State Building. One of our favorite places is the Pantages Theater, which was built in 1930 and filled with historical charm; they have created two small disabled seating sections with ramp access on either side of the orchestra section. Starting with “Wicked” in 2007, we have taken Danny to see many musicals such as “Mama Mia” and “West Side Story” (and then ended up getting the DVD version for repeated viewings at home).
On Sunday, we went to the matinee showing of “Shrek: The Musical” and Danny was mostly enchanted with seeing the movie come to life on the stage, including dancing rats and a huge dragon puppet, although he was annoyed at any deviations from the movie version.
One of the highlights is when all the “fairy tale” character misfits come together and mobilize themselves to fight back against the tyrannical Lord Farquaad, singing an anthem of empowerment, “Wave Your Freak Flag High.”
It was one of those “we’re not gonna take it” moments of people power over unjust authority, and the audience, including all the little kids present in the audience clapped heartily at the end. When the show was over, we wheeled Danny in his stroller into the lobby. Many of those same kids stared, some a little scared, some curious and some with hostility. Just as I was feeling down, an older African-American woman came by. “Did you enjoy the show?” she knelt down and asked Danny. “Yeah” Danny answered. “God bless his soul” she said to us and walked away.
As Pinocchio said at the end of the song, “I am wood. I am good. Get used to it.”
July 20, 2011 | 1:14 pm
Posted by Michelle K. Wolf
A small news item on LA Observed caught my attention this morning:
“Lakers Center Andrew Bynum was videotaped parking his BMW across two marked disabled spots at the Bristol Farms store in Westchester. Joel Grover of KNBC has posted stills from the video, which the stations says was shot by a parking enforcement official.” He was unfortunately, not fined nor cited, which really pisses me off, since with a $14 million salary, the $353 fine would hardly be a financial hardship, and would have sent out a loud and clear signal that people who don’t have legitimate disabled placards shouldn’t park in disabled sports. Not ever. Even if you can rationalize it—“Um, these groceries are really heavy and I’m in a big fat rush to get to practice.”
We have had disabled parking placards for at least a decade for our son Danny, who has mild cerebral palsy. As we encourage him more and more to use his walker instead of his large-size stroller cum wheelchair, having access to the disabled spots becomes even more important to us in terms of mobility training and helping him to be independent. During his recent stay at Camp Ramah in Ojai, the camp put in a “curb cut” and laid down plywood to accomodate his mobility needs, which was truly heartwarming.
In general I find that most people are really good about observing the law and leaving the spaces open to those who really need them, but every now and again, there’s some jerk who decides he/she can’t be bothered to obey the law and be a good citizen. I don’t follow sports very closely (okay, hardly at all) but my friends who do tell me this isn’t the first time that Bynum has shown himself to be something less than a model citizen and display good sportsmanship.
Two suggestions for Mr. Bynum’s T’shuvah, or repentence, regardless of not getting fined:
1) Make a donation to a local charity that helps people with physical disabilities
2) Spend some time with someone in a wheelchair or a walker and experience life from their perspective, as did Yankees Manager Joe Giradi when as part of Yankees HOPE week of community service, he surprised an elderly blind Yankee fan and came to the stadium with her and her guide dog along her usual route—2.5 hours of train, subway and sidewalk.
Now that’s what I call walking the walk.
July 13, 2011 | 11:47 pm
Posted by Michelle K. Wolf
Since Danny is still at Camp Ramah, I’ve had a little more time to read my email inbox, and it is buzzing about all the proposed Federal cuts to Medicaid, (called Medi-Cal in our state) and how those cuts would impact families taking care of a child or adult with developmental disabilities. The Obama Administration is opposed to most Medicaid cuts, but the issue is still in play, tossed around like a political football.
Compared to Medicare and Social Security, Medicaid is the lesser known of the three major entitlement Federal programs, but is absolutely essential for the most vulnerable populations in society. As the Almanac of Policy Issues says, “The significance of Medicaid’s role in providing health insurance cannot be overstated. The Medicaid program covers millions of low-income women, children, elderly people and individuals with disabilities. “
For adults with developmental disabilities, Medicaid is their main source of funding for almost everything they need or do –medical care, in-home care, residential services, even transportation. For us, Medicaid is our secondary health insurance for Danny, after our private PPO insurance, and it has helped with big ticket items, like wheelchairs and voice output devices (which run around $8,000). If the program is block granted, that means states would receive a fixed amount of money, and many programs would be likely be drastically reduced or eliminated. With spending caps, the ceilings will be set well below current spending, again resulting in program cuts.
On The Arc website (the national group founded in 1953 by parents originally called the National Association for Retarded Children), there were moving stories about the four families who traveled to Washington DC last week to tell their story, including Natalie and Ruben from Texas.
I identified with them at once—parents of 31-year-old TJ, who was born with significant intellectual and developmental disabilities. He needs assistance with everyday activities like bathing, brushing his teeth, getting dressed in the morning, communicating effectively, walking, and preparing his meals. Medicaid covers TJ’s neurologist, endocrinologist, rehabilitation specialist, occasional home care, speech therapist, orthopedic specialist, primary care, and his prescriptions. Medicaid Home and Community Services funding has also paid for modifications to their home that allow TJ to live with them, like ramps and bathroom modifications.
If cuts are passed to Medicaid, there will be increased pressure for religious and faith groups to pick up the slack and fund/provide more help directly to their congregants and members. In essence, it would be turning back the clock to the time when some local communities did an adequate job of taking care of the vulnerable, and others didn’t. Doesn’t sound like a fair playing field to me.
July 7, 2011 | 9:13 pm
Posted by Michelle K. Wolf
For the past two weeks, our household has been strangely different – no puzzle pieces or Lego toys strewn around on the floor and poking up from the sofa, no strains of the “Macarena” and “Theme from Rango” can be heard coming from the Ipod, and the only movies playing on the DVD are art house movies from Netflix.
Thanks to the Tikvah program at Camp Ramah (California) and our wonderful 1:1 aide, Danny, 16, is mid-way through Session I in Ojai, the longest time he will have ever been away from home. A few years ago, we started Danny off with 2 weeks away, and have gradually increased his time at camp, until now he will be gone a grand total of 26 nights (but who’s counting?).
When Danny was little, the most we could hope for was one or two nights away—his complicated medication regime, his craving for routine, and his inability to communicate very much except for an emphatic “NO” and whining on demand. Family members have also given us some nights off which we appreciate, but the logistics are complicated.
We first got an entire weekend away when Danny was around 5 through a program at United Cerebral Palsy (UCP) called “respitality” in which local hotels provide two free nights of stay for the parents, and UCP provided a qualified respite worker from one of their many group homes to take care of Danny, all for free.
The respite worker was very competent and a warm, loving person, who unfortunately, couldn’t really get the hang of kashrut and according to our daughter, fed Danny cheese pizza with a kosher beef hot dog. Plus the respite worker let our daughter stay up way past her bedtime and watch “Jerry Springer” on TV. Oh well. Everyone survived.
But camp, both general and Jewish seemed like the better plan for some quality respite time. Danny first went to a summer camp sponsored by Ability First , and then JCA Shalom and now the Ramah special needs Tikvah program, where his favorite day of the week is Shabbat.
In previous years at camp, we were contacted often about various issues, but this year seems to be going smoothly after an initial bout of homesickness at night. We view on-line photos of him enjoying himself in his favorite place in camp—the pool—and read the blog written by the counselors, so we know all is fine, but it is both liberating and disconcerting not to know what’s happening with him every day.
We’ve decided that “no news is good news” and linger a little longer in the newly-installed hammock, savoring the free time and looking forward to his return in mid-July. Until then, there’s no reason to make the time go any faster.
June 30, 2011 | 12:47 am
Posted by Michelle K. Wolf
As a parent of a child with special needs, we have been warned by many behavioral experts about not giving into “attention getting behavior”
such as when Danny takes off his seat belt in the car or purposely spills an ice-cold drink at the table. The typical parental reaction, of course, is to yell and make a big deal (which I stand guilty as charged), but it turns out that getting visibly upset actually reinforces the bad behavior. Instead, we are counseled to re-direct that need for attention to positive behavior, and to minimize the attention given to the undesirable behavior.
Tracy Morgan must be one dude in need of a lot of attention. Thanks to my friend Ellen over at Love That Max, I caught up with the comedian’s latest “not dos” as we call screw ups around our house. First, he mouthed off some nasty anti-gay remarks in Nashville including the remark that if his son were gay, he would “pull out a knife and stab” him. He apologized twice for that hateful comment, and teamed up with the Gay & Lesbian Alliance Against Defamation for meetings in New York and Nashville. Then he turned around in New York City and during a stand-up routine at Caroline’s Comedy Club on Saturday night, June 25th, he made fun at people with disabilities, and their moms. “Don’t ever mess with women who have retarded kids,” he said. “Them young retarded males is strong. They’re strong like chimps.” Previous news articles about Tracy Morgan have mentioned the fact that he has an older brother with cerebral palsy and much of his attraction to comedy developed from that experience.
As they quote on BlackAmericaweb:
“In his book, “I Am The New Black,” Morgan is more serious than funny, sharing his poverty-stricken childhood growing up in the Brooklyn projects. He says he developed much of his comic skills from childhood. One of the things he says is that when bullies tried to pick on him, he couldn’t summon his older brother because of his disability (his brother has cerebral palsy), so he learned to be funny.”
Whatever the rationale for his latest rant, it’s clear that Tracy needs to start engaging in some positive behavior that will bring hm the attention he apparently craves. And by the way, Tracy Morgan is absolutely right about one thing—us moms of kids with special needs are super strong. We have to be.
June 23, 2011 | 11:39 pm
Posted by Michelle K. Wolf
Support for families raising a child with special needs can take many forms.
When Danny was around 3 years old and we realized that his “developmental delays” weren’t temporary, we began to more actively seek out help and advice. A family we had known for years with a teenager who had intellectual disabilities took us out to dinner and shared the twists and turns of their own challenging journey. Family members offered to help pay for expensive therapies. And a total stranger volunteered to come to over to our home once a week as part of the then “Family Friends” program at Jewish Family Service.
Herb Ehrmann, a successful retired attorney who had been personally touched with his own children with special needs first entered our lives 13 years ago, and still comes over once a week in the evening to provide us with some “time off” or respite from parenting a child with significant disabilities. He is always exactly on time, and invariably in a good mood.
Over the years, Danny and he have developed their own little rituals, such as eating certain food, (for many years Danny called him “Herb Toast”), and watching baseball or basketball on TV, something Danny never does with anyone else.
We usually use those precious free hours to go to the gym and have a good workout, often followed by frozen yogurt (if we are feeling virtuous) or ice cream (when we are not). Other times, we use the time to hear a lecture or see a movie, re-entering the world of ideas and culture outside of our respective work areas.
As with any close friend, we experienced good times together, such as Herb’s marriage to his lovely wife, Connie, and summer evenings in their Jacuzzi, as well as the darker, sadder parts of life.
In addition to coming over to our house once a week, Herb also volunteers for Chaverim, the social/recreational program also provided by JFS (with partial Federation funding). He takes the adults bowling, and goes away overnight with them on Shabbatons and other special events.
This Sunday, Herb is being honored at the10th Annual Shining Star Fundraiser for his 20 years of “generous and dedicated service” to Chaverim at 2 pm at the Milken Community Campus, 22622 Vanowen Street in West Hills.The program will feature a special performance by the Chaverim Singers, silent and live auctions and appetizers & desserts.
For us, Herb has become a very close family friend indeed and we wish him Mazel Tov on this well-deserved honor.
June 16, 2011 | 11:48 pm
Posted by Michelle K. Wolf
Last night I attended the “Father of the Year” 2011 Awards dinner at the Beverly Hills Hotel which benefited the American Diabetes Association, and was deeply moved by the videos, tributes and speeches of the three honorees. One of the honorees was Dr. Kevin B. Kaiserman, a pediatric endocrinologist who works with Type 1 diabetes kids and teens (a newly-diagnosed 17 year-old kept texting him questions during the evening). He talked about how his own father, also a physician, took Kevin along with him to see patients when he was just a child (way before patient privacy laws) and showed him by example how to be both a caring doctor and a loving Dad.
I wish there was a similar gala evening honoring those Dads of kids and teens with special needs who go way beyond the call of duty.
The Dad who takes his twin kids with severe asthma to the Cedars ER so often that the graveyard shift staff members know his name. The Dad who spends every night sleeping with his daughter who has seizures to make sure she makes it through the night. And the Dad who spends countless evening and weekend hours helping his son with cerebral palsy learn how to walk (I’m getting personal here).
What makes these Dads really special is their commitment and dedication to their children, despite the conventional thinking that after a special needs diagnosis, Dads tend to retreat into their professional lives and re-double their efforts to make more money while the moms typically take on the day-to-day tasks of therapies, medical appointments and fighting the insurance company for coverage.
As Jill Brooke said in a HuffPost piece posted on Oct. 24 2008 :
“A recent study in The Journal of Consulting and Clinical Psychology revealed that parents of a child with attention deficit hyperactivity disorder are nearly twice as likely to divorce by the time the child is 8 years-old….
The caregiver—usually the mother—will feel like a twister has ripped through her home and heart, literally uprooting her life. To survive is a daily struggle; to thrive requires a candor between husband and wife that drills into the deepest crevices of their beings and leaves no emotional stone unturned.”
In the Jewish community, our biggest accolades are typically given to the men who have been professionally successful, are the biggest philanthropists, or garner the most Oscars. We tend to stay away from talking about the work/life balance when it comes to fathers, and ignore the fact that 60-hour week jobs can often take guys away from being actively involved in their families, with or without special needs.
I want to end by giving a special shout out to my husband, Aron Wolf, for being such a great Dad for both of our children, and trying to live up to the immortal lyrics of “The King and I” when Yul Brenner sings, “Everyday I do my best for one more day”!
June 10, 2011 | 12:21 am
Posted by Michelle K. Wolf
I don’t spend much time worrying about vampires, mutant aliens or even earthquakes (okay maybe a little) but the fear monster that lurks in the back of my head is: will someone else ever be able to take care of our teenage son Danny with multiple disabilities as well as we do?
This fear was intensified the other day while reading the NY Times article of June 5th, 2011 with the blood curdling headline of A Disabled Boy’s Death, and a System in Disarray, part of a larger investigative series, highlighted the problem of low-paid staff, some with criminal backgrounds, who often provide the hands-on caregiving on a daily basis. After just finishing reading “The Beautiful Girl” by Rachel Simon, which provides a historical fictionalized account of similar state institutions during the 60s , including many acts of cruelty and violence against disabled residents, I had felt thankful that we were living in better, more enlightened times; the NY Times article felt like a slap in the face.
Because of this investigative series of articles, I am sure that a full government investigation will take place, some people (mostly lower level) administrators will be fired, and things will improve, at least in the short run. But the fear that a crazed, stoned minimum wage worker can hurt or harm our son remains high.
While worrying about this distant future, I do have something far more pleasant to look forward to (as does he)—the Camp Ramah California Tikvah program which starts in just a few weeks. Danny will be accompanied by a wonderful aide, who we have literally known since his birth, and I know that Danny will be well-cared for, even spoiled by having tons of attention from campers, and staff. We have already begun to pack the first duffel bag, and almost every day Danny finds another toy, a book, that he wants to see packed.
We will all benefit from the 26-night break (but who’s counting?), and will enjoy a happy reunion mid-July The question is, how can we take that wonderful away-from-home intensive Jewish experience (with a pool to boot!) and turn that into an adult lifetime?