August 31, 2012 | 9:09 am

Why Charity Isn’t Enough

Posted by Michelle K. Wolf

“I’ve been knockin’ on the door that holds the throne
I’ve been lookin’ for the map that leads me home
I’ve been stumblin’ on good hearts turned to stone
The road of good intentions has gone dry as bone
We take care of our own.”
—Bruce Springsteen

During this political season, we are hearing a lot about how big government should or shouldn’t be, and its appropriate role in our individual lives. For those most vulnerable among us, including the poor, the disabled and the frail elderly, the real question is: will the government be there for me when I need it the most?

As important as private charity donations are, the simple fact is that even when donors are generous as they often are in the Jewish community and other faith-based groups, the collective efforts of all that fundraising can’t come close to the real costs of taking care of people in need, especially so if there are long-term needs. According to the International Federation of Health Plans, the average cost per hospital stay in the United States was $15,734—would your synagogue or church want to foot that bill for every congregate who didn’t have health insurance or Medicare/Medicaid?

And those numbers are chicken feed when we start looking at long-term care.
My almost 90-year-old Dad took a bad fall last week, fractured his hip, had surgery and is now in rehab care for the next month or so at a skilled nursing facility.  That service would cost around$230 a day out of pocket without his Medicare and supplemental coverage. He’s getting high-quality physical therapy five times a week, but with less coverage, he would be receiving far less sessions, even if the doctor recommended it for optimal recovery.

A lot of disability advocates are very worried about the Ryan (and now Romney) proposal to turn Medicare into a voucher system. Although Medicare is widely known as health insurance for those over age 65, federal law was changed in 1972 to include those with permanent disabilities. As David Lazarus reported in the LA Times last week on how the Ryan plan would work:

“People under 55 would receive a federal subsidy — a voucher — to buy health insurance once they reach the eligibility age, which Ryan would raise to 67.
That voucher would be used to buy either conventional Medicare coverage or a similar plan from, say, one of half a dozen private insurers. The amount of the voucher would be determined by the cost of the second-least-expensive plan available, which experts say would likely be private coverage that would not be as comprehensive as Medicare.”

The bottom line is that we are facing a potential situation of a lot less care for those who need it the most.

August 20, 2012 | 10:33 pm

Why We Don’t Use the Word “Retarded” and Why You Shouldn’t Either

Posted by Michelle K. Wolf

During our recent LA Federation Special Needs Mission in Israel, Danny Katz from the Welfare of Ministry took great pains to point out that they were changing the name of his department from “Adults with Mental Retardation” to “Adults with Intellectual Disabilities”, so that Israel, in Katz’s words “could keep in alignment with the United Nations and the rest of the world.”

It’s high time for everyone else to follow his example. I can’t think of a better time to start than during the Hebrew month of Elul, which began on Aug. 19th, since this month is traditionally a time set aside for self-reflection and “tshuvah” or repentance before the High Holidays.

And I’m not just talking about jerks and people who don’t know better. From my point of view, way too many well-meaning, good-hearted people use the word “retarded” all the time to talk about the computer that isn’t working, a non-responsive customer service department, even a politician that they don’t much like. At Jewish non-profits, day schools, and even at synagogues, you don’t have to spend much time hanging out before the “r-word” pops up again and again.

Ironically, the term “mentally retarded” was first used in the 1950s to replace such derogatory terms as “feeble-minded” and “imbecile” and in the world of special education, there was a clear distinction between “educable retarded”, those students who can progress academically to a late elementary level and “trainable mentally retarded” referring to students whose IQs were lower but who were still capable of learning basic living skills in a sheltered setting, such as a group home.

The sting of hearing those terms applied to my child, then aged four, was deep and bitter. Only by sharing my heartache with other moms did I start to turn from sadness to anger, and finally settled somewhere between defiance and advocacy.

Disability advocates around the world have been trying to get the official diagnostic description of someone who learns at a slower rate than same-age peers changed for many years, and the professional world has pretty much agreed to change over to the term “intellectually disabled”. State and federal governments have or are in the process of officially making this change to the laws and statues that address legal or policy issues around this population, but the changeover hasn’t quite made it fully into popular culture, even with the best efforts of the Special Olympics initiative with their “spread the word to stop the word” campaign.

At this point in time, “retarded” has long outlived its usefulness as a diagnostic category and has instead become the go-to word for late-night comedians for an easy laugh. The “r-word” needs to go the way of other ugly ethnic/sexual orientation slurs, and disappear from our daily conversation.

We can all draw inspiration for this holy work from the words of Psalm 27, traditionally read daily during the month of Elul:

“Show me Your ways, O God,
And lead me on a just path”

5 Comments — Leave your comment

August 11, 2012 | 3:59 pm

Mars and Special Needs

Posted by Michelle K. Wolf

My daughter likes to tease me that I can find something dealing with “special needs” in nearly everything I do—from picking movies that have a character with a disability to meeting a random person on the airplane who is a single mom raising two boys with autism. I’ve told her that the issues find me, not the other way around.

So there I was last Sunday night at the Pasadena City College for a “friends and family” event of the JPL Mars Science Lander (MSL) better known as “Curiosity”, taking on every anxiety-turning-into-joy moment with my husband, who is an engineer at JPL and had been part of the early stage planning for the mission, as well as part of the review team.  Out there on Mars, some 150 million miles away from us, an incredibly complex and awesome set of landing maneuvers were about to take place, but what did I see seated in the row in front of ours?

An adorable blond-haired boy around the age of 3, squirming, whining and obviously up way past his bedtime. When he stood up, I saw the orthotic braces on his small feet, the kind Danny also wore when he was young, to help straighten his feet and give some arch support. Many kids with cerebral palsy (CP) end up wearing them for a least a few years. For us, the worst part was trying to keep Danny still while they applied the plaster to make a mold of his feet, and since he was growing, we had to do new molds every 6 months.

At about 30 minutes before touchdown, I leaned forward to whisper to the Mom, “I couldn’t help but notice that your son is wearing orthotics just like our son who is away at camp,” She sat up in her chair and whispered back, “Yes, he’s got a mild case of CP and we are doing everything we can,” She got a little teary as I told her that they were doing a great job, and that her son was going to be okay.”

We talked for a few minutes about physical therapy and the merits of swimming while the computer graphics on the big screen in the front of us showed what they thought was happening with the spacecraft. The JPL engineers on the video were munching down their peanuts for good luck while my husband looked at graphs on his laptop.

As each of the entry, landing and descent stages happened, the crowd in the auditorium roared its approval, while the little boy was out of the room with his Mom. They came in a few minutes before the 10:31 pm touchdown time, the boy asleep on his mother’s shoulder, sucking his thumb. I glanced at the Mom, and our eyes meet for just a second.

Then at 10:32 pm the screen showed Al Chen, a JPL engineer saying, “Touchdown confirmed.” Everyone stood up and applauded while the Mom remained seated with their sleeping son, who woke up a bit and smiled.

0 Comments — Leave your comment

July 26, 2012 | 3:35 pm

Warm Stones, Many Wishes

Posted by Michelle K. Wolf

We ended our Special Needs Study Mission by placing our collective wishes and hopes in the time-worn cracks of the large stones of the Kotel (Western Wall). Over on the crowded women’s side, the young woman with autism who was part of our delegation had a very interesting observation. “You know,” she said, “stones are usually cold when you touch them, but these stones are warm.”

I inched my way to the front, holding my folded-up note tight in my sweaty hand. I thought about friends and family in need of physical healing, of the safety and happiness of our daughter and also the unknown future for our son with significant developmental disabilities. In all of our 13 site visits over the past five days, we hadn’t really seen a young adult with his particular constellation of strengths and challenges. Where will he live after he moves out? What will he do with his days that is meaningful, fun and part of the larger society?

As the sun was setting to the west, casting a yellowish-light reflecting off of all that Jersualem stone, women of every age, shape and religious orientation were praying fervently all around me. Some came with their own siddurs (prayer book), and others with eyes closed, praying what was in the heart. It seemed that everyone had a special plea, an extra request, a personal favor to ask of God. There were literally hundreds of prayers being directed into that sacred space all at the same time.Perhaps all that human striving was somehow being transmuted into energy that radiated off of the stones, coming back to us when we touched the wall.

Over the course of our journey in Israel, there have been many times when we felt inspired and ready to take on a whole new undertaking, based on what we were experiencing.There were also times when we felt overwhelmed by the limited resources and lack of interest in the larger Jewish community in the whole topic of special needs. As Avital Sandler-Leoff, a staff member of JDC Israel Disabilities commented, “In all my 18 years of doing work for people with disabilities in Israel, this is the first group from the States like this who came to see our programs for people with special needs.”

Our task now is to take the heat and energy of this Special Needs Mission and translate into something much bigger. We must find a way to spread the warmth of empathy and compassion into every corner of the Jewish community, both in Los Angeles and Israel.

1 Comments — Leave your comment

July 22, 2012 | 1:58 pm

It Takes a Kibbutz (or Two)

Posted by Michelle K. Wolf

The cafe and gallery of the Kamah Association at Kibbutz Harduf looked like a place plucked directly from Berkeley, CA with high ceilings, natural wood tables and shelves filled with ceramic bowls, plates and cups, plus multi-colored textile placemats, bookmarks and wall hangings. The food was vegetarian, all organic, and locally-produced. I shook my head, and reminded myself that we were in northern Israel, visiting the Beit Elisha “community within a community” that is home to 65 adults with developmental disabilities, from quite severe to high-functioning. Most of the adults with special needs live in housing on the Kibbutz, but some live in satellite apartments in the nearby town of Tiv’on. Along with a separate group of at-risk youth, called Tuvia, these two groups who need special care are part of the larger Kibbutz Harduf, with a total of 650 residents.

This Special Needs Study Mission to Israel is sponsored by the Jewish Federation of Los Angeles, and is comprised of parents, professionals and young adults with autism. Together, we toured some of the on-site workshops where the residents with special needs work—the ceramics studio, weaving room with multiple looms of many sizes, a bakery with incredibly soft whole wheat bread, and the restaurant itself, which sells food and beverages to the students who attend school there, and the other Kibbutz residents. As we looked around, an infant crawled on floor near her dad drinking expresso while a young mom read aloud from the Hebrew picture book “Miriam B’Yam” (Miriam and the Ocean) to her delighted toddler. Seeing that picture book took me back in time, with my husband reading it in Hebrew to both of our kids (it has some great rhymes) when they were small.

Kibbutz Harduf is affiliated with the Waldorf Schools in Israel, also known by the tongue-twisting concept of “anthroposophy” which is, to quote from Wikipedia, “The educational philosophy’s overarching goals are to provide young people the basis on which to develop into free, morally responsible and integrated individuals and to help every child fulfill his or her unique destiny”. This same philosphy is applied to their work with adults who have developmental disabilities, and each adult is encouraged to express him or herself to the fullest. In addtion to their work duties in the various workshops, the residents also engage in text study, and therapies for their individual needs. Two key challenges are finding enough private donations to pay for all the expenses not covered by the Israeli government funding, and also reducing staff turnover. Their solution: ” You neeed to feed the souls of the staff.”

Our second kibbutz experience at Kishorit was quite different, although a similar setting. Located near Carmiel, Kishort is in their own words, “a caring community of adults with special needs” with 148 adults with developmental disabilities and mental health issues, accompanied by 175 staff. Aside from the beautiful landscaping and great views, Kishorit is distinguised for its ten on-site businesses which include prize-winning dog breeding/kennels, horses, goat milk products, wine, organic eggs, fruits and vegetables. Residents can choose where they want to work (or if they want to work at all) plus can choose from 45 different afternoon activities such as video production, computer training, basketball, dancing, the gym etc.

Their challenges were very similar to those faced by every direct social services program provider—not enough government funding, and finding, training and retaining the best staff. Their secrect to getting the right staff? “We pay our staff more than other places,” was the answer.

These two different kibbutz models of communal living gave us lots to think about, and to ponder how we might create something similar in Los Angeles. Our heads are already getting filled up with facts, approaches, ideologies, and this was only Day 1 of our site visits!

Follow along with us here.

0 Comments — Leave your comment

July 22, 2012 | 12:47 pm

It Takes a Kibbutz (or Two)

Posted by Michelle K. Wolf

The cafe and gallery of the Kamah Association at Kibbutz Harduf looked like a place plucked directly from Berkeley, CA with high ceilings, natural wood tables and shelves filled with ceramic bowls, plates and cups, plus multi-colored textile placemats, bookmarks and wall hangings. The food was vegetarian, all organic, and locally-produced. I shook my head, and reminded myself that we were in northern Israel, visiting the Beit Elisha “community within a community” that is home to 65 adults with developmental disabilities, from quite severe to high-functioning. Most live in housing on the Kibbutz, but some live in satellite apartments in the nearby town. of Tiv’on. Along with a separate group of at-risk youth, called Tuvia, these two groups who need special care are part of the larger Kibbutz Harduf, with a total of 650 residents.

This Special Needs Study Mission to Israel is sponsored by the Jewish Federation of Los Angeles, and is comprised of parents, professionals and young adults with autism. Together, we toured some of the on-site workshops where the residents with special needs work—the ceramics studio, weaving room with multiple looms of many sizes, a bakery with incredibly soft whole wheat bread, and the restaurant itself, which sells to the students who attend school there, and the other Kibbutz residents. As we looked around, an infant crawled on floor near her Dad drinking expresso while a young mom read aloud from the Hebrew picture book “Miriam B’Yam” (Miriam and the Ocean) to her delighted toddler. Seeing that picture book took me back in time, with my husband reading it in Hebrew to both of our kids (it has some great rhymes) when they were small.

Kibbutz Harduf is affiliated with the Waldorf Schools in Israel, also known by the tongue-twisting concept of “anthroposophy” which, to quote from Wikipedia, “The educational philosophy’s overarching goals are to provide young people the basis on which to develop into free, morally responsible and integrated individuals and to help every child fulfill his or her unique destiny”. This same philosphy is applied to their work with adults who have developmental disabilities, and each adult is encouraged to express him or herself to the fullest. In addtion to their work duties in the various workshops, the residents also engage in text study, and therapies for their individual needs. Two key challenges are finding enough private donations to pay for all the expenses not covered by the Israeli government funding, and also reducing staff turnover. Their solution: ” You neeed to feed the souls of the staff.”

Our second kibbutz experience at Kishorit was quite different, although a similar setting. Located near Carmiel, Kishort is in their own words, “a caring community of adults with special needs” with 148 adults with developmental disabilities and mental health issues, accompanied by 175 staff. Aside from the beautiful landscaping and great views, Kishorit is distinguised for its ten on-site businesses which include prize-winning dog breeding/kennels, horses, goat milk products, wine, organic eggs, fruits and vegetables. Residents can choose where they want to work (or if they want to work at all) plus can choose from 45 different afternoon activities such as video production, computer training, basketball, dancing, the gym etc.

Their challenges were very similar to those faced by every direct social services program—not enough government funding, and finding, training and retaining the best staff. Their secrect to getting the right staff? “We pay our staff more than other places,” was the answer.

These two different kibbutz models of communal living gave us lots to think about, and to ponder how we might create something similar in Los Angeles. Our heads are already getting filled up with facts, approaches, ideologies, and this was only Day 1 of our site visits!

Follow along with us here.

0 Comments — Leave your comment

July 20, 2012 | 8:55 am

We Made it to Israel

Posted by Michelle K. Wolf

The humidity hit us as soon as we left the air-conditioned terminal at Ben Gurion airport; the hot sticky welcome reminding us that despite the palm trees and sunny skies, we weren’t in Southern California anymore. We are here, in Eretz Yisrael for an incredible seven-day Special Needs Study Mission to explore some of Israel’s innovative programs for adults with intellectual/developmental disabilities, sponsored by the LA Jewish Federation. Our flights had a mix of American and Israelis, with the Israeli kids running around in circles in the aisles in their “footy pajamas” and macho-looking Israeli guys wearing fuzzy socks with polka dots to be comfy during the 9 hour flight from New Jersey to Tel Aviv . Our first five-hour flight from LAX to Newark was over-crowded and late. Watching the movie, “The Exotic Marigold Hotel” was the only redeeming aspect of that trip.

I tried to speak my limited Hebrew to the Sherut (shuttle driver) and at first heard myself speaking Spanish before switching over to Hebrew. Despite my really bad accent, he persisted in asking me questions about where the hotel was, and I managed to spit out a sentence. It feels strange for me to be in Israel without the rest of the family, as my past three visits to Israel have focused so much on finding accessible routes and locations for our son Danny, who has physical and developmental disabilities. But thanks to Camp Ramah of California’s Tikvah program, he will be happily enjoying the next few weeks in Ojai, California while I am away on this Mission, and my husband joins us early next week. We’ve got a nutsy schedule, visiting some 13 separate sites, plus a conference with local experts and parents on Monday.

But for now, we get to start off slowly, with a Shabbat service on the beach led by Rabbi Jackie Redner, the Rabbi in Residence and Chaplain for Vista Del Mar Child and Family Services, and then enjoy a group dinner tonight on the roof of the hotel. Tomorrow we have a morning discussion among the 32 participants, sharing our motivations for joining this mission, and our expectations for the week ahead. And then, we take off at the ungodly-hour of 7:15 am on Sunday (the first day of the work week in Israel) to drive up north, where we will visit Kibbutz Harduf, with its “community within a community” of 65 adults with developmental disabilities who live among the typical Kibbutz residents and participate in its social and cultural life, with various work assignments. We will also visit Kishorit, near Karmiel, a community of 140 members, staff and volunteers of adults with developmental disabilities.

Follow along with this on this blog and also through the LA Jewish Federation blog here.

0 Comments — Leave your comment

July 15, 2012 | 10:03 pm

It Takes a Community to Prevent Child & Adult Abuse

Posted by Michelle K. Wolf

FBI Director Louis Freeh used the term “ callous indifference“ to describe how the four leaders at Penn State placed their worries of possible bad publicity for their prestigious football program over concerns for the youngsters victimized by Jerry Sandusky. In fact, teachers and coaches of those under the age of 18 are “mandated reporters” and under Pennsylvania state law, are required to report any suspected abuse to the state toll-free 24/7 hotline established by that state’s Dept. of Public Welfare.

Most states have similar laws on the books, yet abuse of children and vulnerable adults too often goes unreported. What about members of the general public who aren’t mandated to report abuse? Is there an obligation to report suspected child abuse (or dependent adult abuse for persons ages 16-84 who are mentally/developmentally disabled)?

As the parent of a fun-loving teen with significant disabilities, I sometimes worry that he could become a victim of physical or sexual abuse. Sure, I trust his aides, babysitters and camp counselors, but what about someone I don’t know down the line? The statistics are pretty bleak —a 2000 study in the Journal of Interpersonal Violence stated: “Among adults who are developmentally disabled, as many as 83% of the females and 32% of the males are the victims of sexual assault.”

And on the reporting end, a 1995 study showed that only 3% of sexual abuse cases involving people with developmental disabilities are ever reported to the authorities. That’s why I need your help to prevent abuse against my son, and others are who similarly vulnerable.

Since parents can’t be with their children (or dependent adults) every minute of the day, we need everyone to be our extra set of ears and eyes. I’m not telling you to become crazed and read too much into an innocent event, but to be watchful nonetheless. Did you witness something that made you want to look away? Was there an interaction that seemed way out of line? Even if you suspect something, who would you tell?

In Los Angeles County, suspected child abuse should be reported to the Child Protection Hotline 24 hours a day, 7 days a week, toll-free at (800) 540-4000.

For suspected abuse of dependent adults (18-64) or elder adult abuse (65+), contact Adult Protective Services at (877) 477-3646. Adult Protective Services (APS) is a 24-hour service program that investigates all reported at-risk situations without regard to income involving individuals 65 or older and dependent adults (18-64 who are physically or mentally impaired). Types of referrals include physical, sexual or financial abuse, isolation, neglect, or self-neglect.
**********

To end on a much happier note, I learned that Camp Ohr Lanu, the Family Camp For Jewish Families Raising Children ages, 4-14, with Special Needs still has a few slots available for this Aug. 17-22 at Camp Ramah in Ojai, CA. This is an extra-special opportunity for all members of your family to benefit from a camp experience – parents, siblings and the child/teen with special needs.

Ohr Lanu builds a true community with its trained, caring staff that includes special educators, behavior and family education specialists, and individual counselors paired with each family. Each special needs child will choose a focus - dance, music, art or drama- facilitated by a trained therapist in that area. Siblings also have in their own group activities, helping create new friends who “get it”. Parents have their own track with text study, networking and relaxation. And together, families will enjoy everything Camp Ramah offers: an Olympic size swimming pool, ropes course, hiking trails and more.

For more information, go to here.

0 Comments — Leave your comment

July 6, 2012 | 9:30 pm

Looking Back, Looking Forward

Posted by Michelle K. Wolf

I’m looking forward to a reunion of my Whittier BBG (B’nai B’rith Girls) teen chapter this Sunday, seeing many girfriends I haven’t seen for 33 years. Thumbing through old scrapbooks with yellowing photographs of me wearing bell-bottom pants, it’s hard to believe I’m the same person smiling out from the 1970s.

Although I had a pretty good time at public high school and was very active with the school newspaper and service clubs, my heart belonged to BBG (along with a few guys in the boys group, the AZA). Weekly planning meetings, Friday night “culturals” and Saturday night “socials” along with phone calls that lasted late in the night were my lifeline. The bonds of friendship and sisterhood were deep and nourishing, even when suffering teenage angst about the huge pimple on my nose or the smallest social slight.

The best part about BBG was that we girls were in charge of our own programs and not adults. If we didn’t pick up the handset of the phone (being the prehistoric pre-cell phone days), events didn’t happen. We had to learn how to get things done, and even more importantly, how to get other people to get things done. Sometimes we failed (a regional car rally comes to mind) but most of the time, the planning and teamwork paid off.

At the time, I had BIG plans: to go to college, get an international business degree and travel around the world, making money and doing my share for world peace. Within one semester of my freshman year at college, I realized the business classes were boring and forced me to do way more math than I wanted to so I quickly changed my major to journalism.

I knew that I wanted to get married and have children but had a general hazy idea that “quality” day care would take care of the kiddies, while I would be free to travel, attend interesting lectures, read the latest hard-cover novels and take as many yoga classes as I desired.  (Ah, the naïveté of the young…).

There was very little in my teen years that would prepare me for parenting a child even with a mild learning disability, let alone a complicated multiple developmental disabilities. I never imagined that my days would be occupied with medical appointments with specialists, working on basic walking and talking skills, and ensuring that my son was getting every possible therapy to stimulate his body and his brain.

But having had the experience of creating agendas, developing check-lists and thinking through all the things that could go wrong while in BBG actually did give me the confidence and tools to approach our son’s disability like just planning another dance or weekend conclave, only this time on steroids. And as we start planning our son’s young adulthood and beyond, those same skills will keep me from freaking out, and help me to focus on the years ahead.

1 Comments — Leave your comment

June 29, 2012 | 12:24 am

Waiting Rooms, Insurance Denials and the Supreme Court

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.

1 Comments — Leave your comment

June 22, 2012 | 1:46 am

Why We are Going to Israel

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!

3 Comments — Leave your comment

June 17, 2012 | 2:04 am

Supporting Dads Who Have Children with Special Needs

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).”

0 Comments — Leave your comment

June 7, 2012 | 11:58 pm

Black Like Me and Reality TV

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.

1 Comments — Leave your comment

May 29, 2012 | 11:51 pm

Inclusion, Segregation and Integration

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.

0 Comments — Leave your comment

May 20, 2012 | 12:13 pm

What’s next : Dancing chickens and Re-commitments

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.

0 Comments — Leave your comment

May 15, 2012 | 10:59 am

Why the Proposed CA Cuts Suck

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.

0 Comments — Leave your comment