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.
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. . .
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.