Posted By Sarah Blitzstein, Guest Blogger, Jewish Family Service, Los Angeles
There’s a movement happening and it’s happening now.
Like the early pioneers who settled the land of Israel, individuals with special needs and their families are creating change for the future and crossing unknown lands towards acceptance, appreciation and inclusion. They are inspiring service providers,teachers, family and friends. And this week, they inspired 25 leaders in the Jewish disability community who gathered at the Pearlstone Retreat center in rural Maryland (well it may just be 25 minutes outside of Baltimore but for this native Angeleno, it sure felt pretty rural!) to learn about Disability and Inclusion in the Jewish community.
Along with Adynna Swarz from the Jewish Federation of Greater Los Angeles and Elaine Hall from The Miracle Project Judaica and consultant at Vista Del Mar, I was fortunate to be invited to attend the first Jewish Leadership Institute on Disabilities and Inclusion. presented by The National Leadership Consortium on Disability and Inclusion, a program of the University of Delaware’s Department of Human Development and Family Studies.
(For more information, visit here or search for our hashtag #JInclusion13 on Twitter and Facebook).
Thanks to the generous funding of The Ruderman Family Foundation and support from The Harry and Jeanette Weinberg Foundation, educators, community professionals, family members and self-advocates from across North America came together to grow, learn and see what best practices we can bring home to our communities to create change.
From all different areas in the disability community, we came together and learned about housing initiatives, educational programs, employment possibilities, how to work with funders and boards and welcoming children and adults with special needs, and their families, into all aspects of Jewish communal life.
An underlying theme throughout the week was creating person-centered programming and always including the person with special needs in decision making and choices. As Joshua Erenmark, a teenager with Autism, reminded us on the Jewish Federation Special Needs Study Mission to Israel: "Nothing about us without us" (read more about it on this blog by clicking here).
As with any change, we know it is not easy and will require hard work. We came from different social service and community agencies, educational,housing and vocational programs but over delicious, organic meals and long walks around Pearlstone, we found that we have much to learn from each other. A colleague in Atlanta working with adults can help someone planning educational programs for children at a school in Baltimore. I can call colleagues in Detroit and get guidance about creating programs for teens with special needs here in LA. The amazing staff of the Leadership Institute pushed us to question the status quo and dream big for the future. As Rabbi Lynne Landsberg, senior advisor on disability issues to the URJ Religious Action Center of Reform Judaism, said so beautifully, “We must change attitudes from pity to possibility.”
Attitudes in the Jewish community are changing, at their own pace, and we are ready to help facilitate that change. The week we spent at Pearlstone fell during the last four nights of Chanukah. On Wednesday, as we lit the candles for the 8th night of Chanukah and danced around a beautiful fireplace, we experienced the miracles that Chanukah describes.
During Chanukah, we celebrate the miracle of oil lasting for eight days instead of just one and that a small group of Jews was able to defeat the mighty Greek army. We, like the families and individuals that we help and support, are overcoming the army of injustice and exclusion and fighting for a world of inclusion and possibility for those with disabilities and special needs. Our work will continue as we return to our homes, in Los Angeles, Boston, Toronto and beyond, but we are forever changed from this week of leadership, learning and growth. Nes Gadol Haya Po. A great miracle has surely happened here.
Sarah Blitzstein, MSW, MAJCS is the Director of Hamercaz and Special Needs Programs at Jewish Family Service of Los Angeles. She works with children and adults with special needs and can be reached at SBlitzstein@jfsla.org
For more information on Hamercaz (one-stop special needs resource for birth to 22), go here and to learn more about Chaverim, social/recreational programs for Jewish adults with special needs, click here.
12.5.13 at 8:56 pm | The first national Leadership Institute on. . .
12.3.13 at 7:51 am |
11.22.13 at 6:05 pm | When all four Jewish movements come together to. . .
11.15.13 at 12:00 am | Self-Advocates and Family Members are furious by. . .
11.3.13 at 10:36 pm | Teachers-in-training want to include more. . .
10.27.13 at 10:12 pm | A group of parents in the 50s and 60s refused to. . .
December 3, 2013 | 7:51 am
Posted by Michelle K. Wolf
As the son of a small-plane pilot, our son Danny has become a very good airline passenger, and eagerly looked forward to driving to LAX to fly east to see Grandma, his big sister Rachel who is studying at NYU and other relatives. He was happy with his pre-flight frap and enjoyed the cloudscape out the window during the five-hour journey. But almost as soon as the luggage was off the carousel, Danny began to say “home, plane, home, plane” meaning when are we getting back on the plane to go back to Los Angeles?
And although we’ve celebrated his 19th birthday, Thanksgiving and Hanukkah, plus toured interesting museums, a zoo and other sights while away, he has kept saying “home, plane” every day, over and over again. This has happened on other trips as well, and drives us all nuts.
I think Danny’s strong desire to go home has two main components—one, is his love of flying around in a plane, looking down at the passing scenery and also watching his favorite movie DVDS while munching away on his cheese crackers. And secondly, he really misses his routine of school, swimming; the special needs confirmation class at Vista del Mar and Shabbat at Beth Am. With his limited verbal ability, he has trouble communicating his full range of emotions, and feels most secure when surrounded by familiar people and situations.
The most interesting part is that as soon as we land at LAX, I know that he will start recounting all the events of the past week, including all the holidays, songs and latkes consumed, plus the much-hated coat he had to wear. He will talk about all the animals in the NJ zoo, from the fine-feathered emu to the pair of cuddly brown bears taking a nap right next to the window. And he will have matured, grown in experience and flexibility.
So even though it’s not the most relaxing of vacations, we will keep taking Danny on planes in the future.
November 22, 2013 | 6:05 pm
Posted by Michelle K. Wolf
It’s not everyday that I get emails from both the Orthodox Union/Yachad and the Religious Action Center of Reform Judaism on the same topic –increasing disability inclusion in our synagogues. And it is even more rare to read that the four major Jewish streams—Conservative, Reconstructionist, Orthodox and Reform—have come together for the first time on the issue and created a new joint initiative called “Hineinu” (“We are here”).
The focus of this new initiative is on the sacred space of our synagogues. By joining together, the four streams will share their best practices and encourage all synagogues to proactively become more welcoming communities, both physically and emotionally.
During the first year, the plans are to:
• Create a network of synagogues and professionals among all four movements that will help achieve the goal of making disability inclusion the standard at every synagogue
• Convene community leaders, sharing materials and online resources, networking between lay leadership and disability professionals, and fostering the establishment or growth of synagogue-based inclusion committees.
• Author and share a community-wide resource guide with simple and low-cost suggestions for how synagogues can begin to be more disability Inclusive.
Interestingly, this initiative started at both ends of the observant spectrum, with Deborah Berman, LCSW, director of social work for Yachad and Rabbi Lynne Landsberg, senior advisor on disability issues for the Religious Action Center of Reform Judaism. The Conservative and Reconstructionist movements were then invited to join.
Each movement will implement the suggestions to meet the needs of their own constituencies and will share those adaptations for its specific practices, on their movement websites. “There will be no sharing of religious services or practices between the OU and other denominations – that is not the goal of Hineinu,” said Dr. Jeffrey Lichtman, international director of the National Jewish Council for Disabilities (NJCD), which includes Yachad.
Rabbi Lynne Landsberg, the Senior Adviser on Disability Issues for the Religious Action Center of Reform Judaism, said:
"In Berachot (34b), the Talmud teaches that a synagogue must be built with windows in the sanctuary. I believe this is so we can see who is outside and unable to join us. As Jews, we have to maintain 'mental windows' everywhere so that we can recognize all people, including people with disabilities, as people first. We must look beyond the disability—beyond the 'container' —and see the person within, the person with often unacknowledged, and therefore, untapped potential."
As we get ready to celebrate “Thanksgivukkah,” next week, let’s take a moment to reflect on this historic unity around such an important community issue and hope that this can lead to other collaborative efforts in the future. Who knows? Maybe even Congress can learn a lesson or two on cross aisle cooperation for the greater good.
November 15, 2013 | 12:00 am
Posted by Michelle K. Wolf
On the eve of a first-ever, three-day summit in Washington D.C, Suzanne Wright, co-founder of Autism Speaks, and grandmother to an autistic child, called for a National Plan for Autism, to create a coordinated, national response to the 3 million and growing number of children and adults now diagnosed with autism (current rates are 1:50 according to the CDC).
What’s the problem with that? Don’t we disability advocates want more federal dollars going to help families who have children, teens or adults with autism?
Sure we do, but unfortunately, the pity-evoking, semi-tragic tone Wright used with her “Call to Action” has resulted in a huge cyber-backlash from adult self-advocates who have autism, and many parents as well.
Here’s an excerpt from Wright's opinion piece:
“Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. …
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.
This is autism.”
Her relentless focus on the burdens of raising a child with a developmental disability is really scary to me—after all, if having a family member with severe special needs is such a tragedy, why not remove those kids/teens from their families and communities? Wouldn’t life be easier all the way around? That was the conventional thinking for too long in this country, resulting in such horrors as Willowbook in New York, and unfortunately is still the norm in many countries around the world.
One parent blogger, Shannon Des Roches Rosa, who also a co-founder and senior editor at Thinking Person's Guide to Autism felt that Wright’s letter was
“ham-fisted” (strikes a great chord to a Jewish blogger) and outraged “at her using our lives to yank John Q. Public's pity chains.”
And from an adult with autism:
“We are teachers, psychologists, parents, somebody's children, researchers, scientists, artists, musicians and many, many more. There are many roles for us in the organizations which claim to represent us and work towards improving supports for us… Please remember: Nothing about us, without us.”
In an interesting historical side note, on Nov. 15th, the White House is hosting an observance of the 50th Anniversary of the Developmental Disabilities Assistance and Bill of Rights Act, signed into law by President Kennedy in 1963. Originally called “The Mental Retardation Construction and Facilities Act of 1963”; this was the first federal law to promote community-based health care and provided federal funding for such facilities.
What families and adults with autism and other developmental disabilities need isn’t pity. We need an update of that 1963 law to ensure adequate financial assistance for families, with more job opportunities and affordable housing options for adults . Overall, we need a system that is built to help, not hinder, access to needed services and support.
November 3, 2013 | 10:36 pm
Posted by Michelle K. Wolf
“Disability is now understood to be a human rights issue. People are disabled by society, not just by their bodies. These barriers can be overcome, if governments, nongovernmental organizations, professionals and people with disabilities and their families work together. “
--From the first ever WHO/World Bank World report on disability, Sept 2013
Last week I had the opportunity to spend an afternoon with 12 bright and promising Masters of Education students at the American Jewish University on the topic of teaching students/campers with special needs. A majority of the dozen students either had siblings with special needs, had worked as an 1:1 aide with a youngster with special needs or had encountered campers who had special needs, yet this was their first class addressing the issue directly.
The students were very open to idea of including students/campers with special needs, but one young man pointed out that “everyone keeps talking about inclusion but no one is telling us how to do it.” In some cases, trying to include campers with more severe behavioral challenges, especially if they were prone to violent outbursts, did not end well, with some campers sent home. A big part of the problem was the lack of honesty on the part of parents on the application form, and the fear that parents had that they if they fully disclosed their child’s challenges, they would be excluded from the program.
Another key issue was a lack of in-service staff training. One of the students told me he was recruited by a religious school in Boston to be a 1:1 aide for a student with autism, and his total training consisted of being given one article to read about autism. Another student talked about being matched up a very large male camper with special needs, who required physical intervention, and that she needed to ask for help from a male counselor, who was closer in size to the camper.
We covered a lot of ground during the 2.5 hours we had together including the concept of Universal Design, how the Regional Center system works in California, the difference between learning disabilities and developmental disabilities and the tension between inclusive and separate programs for students and campers with special needs.
I came away from the experience with conflicted feelings: grateful for the opportunity to meet with these students and hopeful, that so many of them were truly committed to including students and campers with special needs in their future work environments and also frustrated that their curriculum wasn’t yet providing the nuts and bolts of working with youth and teens with special needs that they will need to succeed.
October 27, 2013 | 10:12 pm
Posted by Michelle K. Wolf
“Thousands of parents (in the 1950s) were willing to contemplate saying goodbye forever to their small children—for that is what institutionalization truly entailed—only because their doctors were urging them to do so. Virtually all physicians immediately and insistently advised the parents to put the child away.”
---from “The Kennedy Family and the Story of Mental Retardation”
As the quote above says, it wasn’t that long ago that parents of children with diagnosis of mental retardation (now called intellectual disability), autism and cerebral palsy, as well as other special needs, were advised by the medical experts to place their son or daughter in at state hospital or similar institution. The conventional wisdom at the time was that placement outside of the home at a very young age was better for the child and the rest of the family. But there were those who refused to go along and said no to institutionalization.
Fast forward to today, and many of those adults with developmental disabilities are now in their 50s and 60s, living longer than anyone thought possible, and the majority (75-80%) are still living in the homes of their parents or siblings. As their parents, now in their 70s and 80s, face their own physical and cognitive challenges, and of course, mortality, the number of older adults with developmental disabilities without a close family caregiver will continue to increase.
This intersection of aging and developmental disability has been the focus of a project I’ve been working on as a consultant to the Bet Tzedek Legal Services, funded through a three-year grant by the Unihealth Foundation (it ends June 2014), and it’s been a fascinating and also unsettling experience to realize that those very parents who refused to go along with the inhumane advice of their own physicians now find themselves in their sunset years with little help on how to ensure a good future for their adult child with developmental disabilities.
Some of the adults with developmental disabilities became part of the CA regional center system, with case management and other assistance, while others never applied, preferring to rely on close family members for support.
Family caregivers of older adults with intellectual/developmental disabilities are invited to an upcoming free conference called, “Caring x2” on Sunday, November 10th, from 10 am-3 pm at the Dorothy Chandler Pavilion of The Music Center. Parking is $9 and reservations are mandatory. For more information go to here. I hope to see many Los Angeles-area parents and siblings at this timely, educational and inspirational conference.
October 20, 2013 | 12:25 am
Posted by Michelle K. Wolf
October is Disability Awareness Month, with a focus on the societal and workforce contributions of people with disabilities. It was first designated in 1945 by Congress as “National Employ the Physically Handicapped Week” and then the word “physically” was removed in 1962 to allow for the inclusion of all Americans with disabilities. In 1988, the week was extended to a month and changed its name to “National Disability Employment Awareness Month.”
As President Obama said in his recent proclamation; "Every day, Americans with disabilities enrich our communities and businesses. They are leaders, entrepreneurs, and innovators, each with unique talents to contribute and points of view to express. “
Unfortunately, too often these type of “awareness” months end up being more of an echo chamber than a microphone, as the people who are most impacted by the particular disease or condition talk to each other, usually complaining that no one outside of that inner circle is paying any attention. And the people “outside” may see a poster, read a post or even cry at a moving video, but it doesn’t result in any long-lasting change.
So I’d like to propose that this year, people who haven’t yet been impacted by disability in one way or another take a pledge to grow an “invisible disability antenna” that will be permanently tuned in to the needs of people with different disabilities:
1) Alert the building manager or security guard when an elevator stops working, especially if there’s only one in a building, and ask that it be fixed right away so everyone can continue to access the building. And please, never park in a disabled space, even for a quick dash into Starbucks. Especially if it's a quick dash into Starbucks.
2) If you see a child or adult making odd noises, flapping their hands or spinning in circles, don’t assume the person is misbehaving-this could be a person with autism trying their best to regulate their sensory system. Be kind.
3) When a blind person is walking down the street with their white-tipped cane or service dog, don’t walk as far away as possible and assume the person won’t sense your presence. A warm “hello” and “on your right” would be more appreciated.
4) If a colleague, friend or family member is hearing-impaired, make sure they can see your mouth when you talk, and don’t swivel your head so far away they won’t be able to get the optimal sound level
5) When talking to someone with an intellectual or cognitive impairment, give him or her a chance to respond, even if takes a few more seconds. Slow down , use simple words, and follow their lead.
With your antenna always up and alert to the people around you who have disabilities, you may find yourself experiencing a whole new "buzz" from the incredible diversity and strengths from each and every person you meet.
October 8, 2013 | 11:36 pm
Posted by Michelle K. Wolf
Headlines about the new Pew Study on American Jews:
“Can liberal Judaism survive?”—Washington Post
“Study: American Jews losing their religion”—CNN Religion
The latest Jewish population study commissioned by the Pew Research Center found that 1 out of 5 Jews now describe themselves as having no religion, American Jews are intermarrying at a rate of 58 percent and that most intermarried Jews are not raising their kids as Jews. In short, our numbers are shrinking.
This pretty dismal situation is mitigated somewhat that 94 percent are proud of being Jewish and 75 percent have a strong sense of belonging to the Jewish people. But there are many sub-groups of non-Orthodox Jews who yearn to be part of the larger Jewish community, but are held back by multiple barriers of ignorance, stigma and a lack of empathy.
First of all, there’s all the lower-income people (around 20% of the Jewish population) who are struggling to make ends meet and are intimidated by the incredibly high costs of synagogue membership, day schools and overnight camps.
Forcing people to pay an annual membership is like making a restaurant patron order a three-course meal when all they want is an appetizer. It’s high time that a new business model was developed to take into account that many Jews aren’t wealthy. If the UCLA Hammer Museum can stop charging admission to its permanent collection to encourage deeper community engagement, why can’t synagogues?
Secondly, there’s the LGBT (another 4% of the population) community, who want to be assured that they (and their children) will be warmly welcomed and treated the same as any other congregant or participant. When we attended IKAR’s Erev Simchat Torah celebration the other week, it was great to see many same-sex couples with their young children, feeling comfortable in the diverse crowd.
And lastly, there’s people with special needs/disabilities (another 20% if we include the elderly). Too often, Jews with physical disabilities are only pictured on websites or in mailings if it’s a fundraising appeal, not a membership drive. I’ve met Jews who have hearing impairments who would like to be part of the Jewish community but too few organizations offer the needed accommodations. Families who have a child or teen with autism often encounter a very low tolerance for unusual or noisy behavior, and then the whole family drops away.
Given the contracting nature of the non-Orthodox American Jewish community, we can’t afford to lose any potential engaged persons or households. More than ever, every person counts.