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.
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May 20, 2012 | 12:13 pm
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.
May 15, 2012 | 10:59 am
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.
May 10, 2012 | 10:26 am
Posted by Michelle K. Wolf
This is my sixth Mother’s Day without my Mom, Sheila Krotinger, and as much as I miss her terribly, I often think about all that she has missed. A lifelong, ardent Democrat and strong supporter of gender equality, she missed casting a vote for Hilliary Clinton for President four years ago, and then seeing the first black President sworn into office.
She missed using Facebook, which I think she would have enjoyed since she was one of the first of her same-age peers to get a computer, took classes, and eventually taught other seniors how to send emails (“They can never figure out the cursor” she would complain to me).
And of course, she has missed so many family milestones –the beautiful Bat Mitzvah of my niece in Sacramento, and then Danny’s Bar Mitzvah during Hanukkah, high school graduations, awards/honors, my nephew’s published books, my daughter performing in off-Broadway shows in New York City and meeting our new cat (we are very big on felines).
I was thinking about all of this when we experienced another milestone this week—Danny, age 17, walked independently for 15 steps or so, a feat he has not done for nine years when medication-induced ataxia set in, on top of his long-diagnosed cerebral palsy. Of course I immediately posted the news on Facebook, my husband videotaped it on his Iphone, and warm congratulations poured in from all over. My Facebook status update received 54 “likes” on this great news, the highest number any post of mine has ever received.
But without Mom to hear about it, the milestone wasn’t complete for me.
Some people say that after someone dies, their “spirit” lives on, but I have my doubts. For me, I would have to say that her voice lives on in my head, prodding me to action, warning me to keep my BS detector on high alert, and reminding me to put on sunscreen and wear a hat.
I love you Mom.
May 3, 2012 | 11:21 pm
Posted by Michelle K. Wolf
For the past few days, I’ve been noticing symptoms of spring fever almost everywhere.
On Wednesday, I coordinated the first meeting of a Family Advisory Council for a new project at Bet Tzedek Legal Services targeting older adults with developmental disabilities and their family caregivers. While I anticipated that much of the discussion would revolve around such weighty issues as independence vs. safety concerns, it wasn’t long before the discussion turned to marriage, love and sex.
With early intervention, and strong support from their families and professionals, many of the adults with developmental disabilities in their later 20s and 30s have made huge progress in their ability to take care of themselves, hold jobs and have friendships but romance (and let’s face it, sex) remains elusive.
“My 26-year old son really wants a girlfriend,” one mother said, “but just doesn’t know where to start.” Another parent there who had a daughter close in age jokingly said that perhaps they should fix the two of them up. We lightly tossed around the idea of starting a paid, on-line dating service for adults with disabilities to keep our program going after the three-year grant runs out.
Later that day, I went to the latest teen performance of the Vista Inspire program’s theatrical production titled, “It’s a Mad, Mad World of Miracles” which features teens with autism and other disabilities, along with teen and adult volunteers. The overall premise of the musical is that a priceless piece of art titled, “The Meaning of Life” has been stolen from the Museum of Modern Art in New York. Teams fan out across the world to find the purloined masterpiece but come back empty-handed. However, in the process of making those sojourns with others, individuals connect in new and unexpected ways, including finding romance in Greece.
And then today, at the Autism Society of Los Angeles conference for parents, professionals and self-advocates on how best to work together for funding and innovation, the best story of the day came from a Mom talking about creating new housing options for adults with autism. When her son with autism was 14 years old, she inherited a sum of money that she used as a down payment for a nearby two-bedroom condo.
At the time, she told her son that the second bedroom could be used for an aide, or perhaps a roommate. The parents rented out the condo, and waited for the son to be ready to move in. When he turned 21, he wasn’t ready to move out, and needed to learn independent living skills such as shopping, cooking and doing laundry. Year by year, he learned more and at age 26, finally moved in. “The second bedroom is now an office,” she said, keeping us all in suspense. “And in the first bedroom, there’s my son with his girlfriend”. The audience roared with approval while she blushed.