January 24, 2013 | 12:57 am

A Presidential Shout Out to Parents of Children with Disabilities

Posted by Michelle K. Wolf

Sitting in our hotel room in Sedona, AZ, we turned on the TV about three-quarters way through President Obama’s inaugural address. Washington DC looked all dressed up but cold and windy while we were soaking up an exceptionally nice day. So while we heard President Obama mention “Seneca Falls, and Selma, and Stonewall” we missed any mention of disability issues. Our college-aged daughter mused which of her friends might be in DC when she received a text from one of them, while our teenage son with developmental disabilities was more excited to hear Kelly Clarkson’s singing than hearing President Obama.

Later on, I scrolled quickly through my Twitter and Facebook accounts, seeing one group after another expressing their happiness at being included in President Obama’s address: Women’s rights, LBGT, African-Americans, Latinos, Muslims and Jews. It felt like Los Angeles on steroids. But what about the disabled?

After we got home, I finally got the chance to read over the full text of his remarks, and there it was, a shout out not just to persons with disabilities, but to their parents as well:

We, the people, still believe that every citizen deserves a basic measure of security and dignity.  We must make the hard choices to reduce the cost of health care and the size of our deficit.  But we reject the belief that America must choose between caring for the generation that built this country and investing in the generation that will build its future.  For we remember the lessons of our past, when twilight years were spent in poverty, and parents of a child with a disability had nowhere to turn.  We do not believe that in this country, freedom is reserved for the lucky, or happiness for the few.

Wow. In those few sentences, I felt the words addressed squarely at us, the millions of parents raising children with autism, cerebral palsy, intellectual disabilities and epilepsy. No more lurking in the shadows of stigma and that over-whelming feeling that we had fallen down the rabbit’s hole into Special Needs Land.  This was big time validation. Other bloggers talked about a similar feeling of elation such as as Maggie World.

My more-politically connected friends thought that shout out might have come from David Axelrod, Senior Strategist for Obama's 2012 re-election, since Axelrod has publicly talked about his own daughter with developmental disabilities and his wife, Susan, has created a national epilepsy foundation.  No matter what the source, we feel that those at the highest positions of power are finally acknowledging our story. And it sure feels good.

January 18, 2013 | 4:59 pm

Join the Coalition to Stop the Proposed Ban on Shared Housing

Posted by Michelle K. Wolf

Whenever something horrific happens, there is a natural temptation for elected officials to react by passing a new law, even if it may have unintended consequences.

In reaction to a Dec. 2 shooting of four people at a Northridge home being used as a boarding house, LA City Councilmember Mitch Englander has been pushing to fast track a law that would change the definition of a boarding house. The proposed ordinance would not allow multiple leases in the same unit or house. Currently, “boarding homes are now allowed in some residential zones that have multi-family housing” according to Greg Spiegel, director of public policy of the Inner City Law Center.

A broad coalition called “Stop the Community Care Facilities Ordinance” composed of more than 100 disability non-profits, legal services (including Bet Tzedek Legal Services), anti-poverty organizations, faith-based groups and chambers of commerce have joined together to defeat this bill, which would greatly reduce affordable, shared housing for many people, including college students, veterans, seniors and people with disabilities. Politics can indeed make strange bedfellows but in this case, the sheer breadth of the coalition demonstrates why this proposed change is bad public policy.

The City’s own Office of Disability has come out against this proposed ban, stating, “People with disabilities are more likely to live in group settings, and inadequate housing and housing instability pose a significantly greater harm to individuals with disabilities than to the general public. Therefore, any ordinance that limits group housing is of great concern to the disability community.”

Although the law would still allow state-licensed group homes to be located in residential areas, it would take away the ability for many creative housing solutions to continue across the city, from shared housing for seniors to having four adults with disabilities renting a home together and pooling the shared expenses.

And for those boarding homes which are dangerous, harbor criminals or which violate health and safety laws, there are already plenty of laws on the books to tackle those problems. Funding for more enforcement is what’s really needed here, not a wholesale ban on shared housing for those with few economic options.

Help stop this ban by following @StopCCFO on Twitter or liking their page on Facebook at StopCCFO-Coalition.

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January 13, 2013 | 12:24 am

Opening up more overnight Jewish camps for campers with special needs

Posted by Michelle K. Wolf

As part of the conservatorship process for our now 18-year-old son with multiple developmental disabilities, we had a meeting recently with staff from the state-funded Lanterman Regional Center to determine what legal rights we as parents should retain now that Danny is no longer a minor in the eyes of the law. One of those rights is deciding where to live.

In the course of the meeting, the staff member asked Danny, “If you weren’t able to live at home with Mom and Dad, where else would like to live?” Danny, who has limited verbal abilities, quickly said, “Ramah!” without any prompting or hesitation. Danny has spent the past four summers at Camp Ramah in Ojai, CA as part of their “Tikvah” special needs program. Despite the fact he is always homesick for us in the evenings for the first few days of camp, Ramah is the place that Danny regards as a home away from home. All year long, he points to his Camp Ramah T-shirts from the previous summer, and talks about his favorite parts of camp: “Ramah pool”, “Dance” and “Meir” his amazing 1:1 aide.

I tell this story in light of this week’s announcement that the national Foundation for Jewish Camp (FJC) has just received a $60,000 research grant from Dr. Allan and Nan Lipton of Hershey, PA to map current services available to children with special needs and physical disabilities at nonprofit Jewish overnight camps across North America. The funding will be used “to provide a thorough understanding of the options Jewish camps offer to children with special needs and provide a baseline for expanding services” according to the press release from FJC.

As things stand now, 150 Jewish overnight camps serve nearly 75,000 children each summer but they are only able to accommodate fewer than 1,000 campers with special needs, and many camps have waiting lists for those few slots. Jewish overnight camp is the perfect place for typical campers to meet, and engage with those campers who have special needs, especially those with more severe developmental disabilities such as our son.

Since most Jewish day schools and many religious afterschool programs aren’t able to accommodate kids with special needs (don’t get me started), camp is the one place where typical campers can meet kids like Danny in the cool of the pool, or during structured “buddy time”. Without the worry of academic success, it is an easy and organic environment to connect with someone a little different from you.

FJC will be partnering with Laszlo Strategies, a firm that helps non-profit organizations in their efforts to champion the causes of people with physical, mental, neurological and developmental disabilities, as well as to promote medical science. I hope that FJC and Laszlo Strategies will be able to collect and analyze the data quickly, and get more kids with special needs coming home from camp with a duffel bag full of dirty laundry and plenty of happy memories to last for next 11 months.

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January 13, 2013 | 12:10 am

Opening up more overnight Jewish camps for campers with special needs

Posted by Michelle K. Wolf

As part of the conservatorship process for our now 18-year-old son with multiple developmental disabilities, we had a meeting recently with staff from the state-funded Lanterman Regional Center to determine what legal rights we as parents should retain now that Danny is no longer a minor in the eyes of the law. One of those rights is deciding where to live.

In the course of the meeting, the staff member asked Danny, “If you weren’t able to live at home with Mom and Dad, where else would like to live?” Danny, who has limited verbal abilities, quickly said, “Ramah!” without any prompting or hesitation. Danny has spent the past four summers at Camp Ramah in Ojai, CA as part of their “Tikvah” special needs program. Despite the fact he is always homesick for us in the evenings for the first few days of camp, Ramah is the place that Danny regards as a home away from home. All year long, he points to his Camp Ramah T-shirts from the previous summer, and talks about his favorite parts of camp: “Ramah pool”, “Dance” and “Meir” his amazing 1:1 aide.

I tell this story in light of this week’s announcement that the national Foundation for Jewish Camp (FJC) has just received a $60,000 research grant from Dr. Allan and Nan Lipton of Hershey, PA to map current services available to children with special needs and physical disabilities at nonprofit Jewish overnight camps across North America. The funding will be used “to provide a thorough understanding of the options Jewish camps offer to children with special needs and provide a baseline for expanding services” according to the press release from FJC.”

As things stand now, 150 Jewish overnight camps serve nearly 75,000 children each summer but they are only able to accommodate fewer than 1,000 campers with special needs, and many camps have waiting lists for those few slots. Jewish overnight camp is the perfect place for typical campers to met, and engage with those campers who have special needs, especially those with more severe developmental disabilities such as our son.

Since most Jewish day schools and many religious afterschool programs aren’t able to accommodate kids with special needs (don’t get me started), camp is the one place where typical campers can meet kids like Danny in the cool of the pool, or during structured “buddy time”. Without the worry of academic success, it is an easy and organic environment to connect with someone a little different from you.

FJC will be partnering with Laszlo Strategies, a firm that helps non-profit organizations in their efforts to champion the causes of people with physical, mental, neurological and developmental disabilities, as well as to promote medical science. I hope that FJC and Laszlo Strategies will be able to collect and analyze the data quickly, and get more kids with special needs coming home from camp with a duffel bag full of dirty laundry and plenty of happy memories to last for next 11 months.

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January 4, 2013 | 12:52 am

The Danger of Denial

Posted by Michelle K. Wolf

“Denial is the refusal to acknowledge the existence or severity of unpleasant external realities or internal thoughts and feelings.”
--Encyclopedia of Mental Disorders

"Denial ain't just a river in Egypt"--Mark Twain

For parents of children with special needs, denial can be a useful coping mechanism, at least initially. When we first observed that our son wasn’t achieving typical milestones as an infant such as crawling or holding an object with two hands, we chalked it up to his contracting chicken pox, or for being more interested in observing than moving around. Especially when he was so young, couldn’t he grow out of it? Many of the professionals we consulted with agreed with us—it was too early to jump to any conclusions but an Early Intervention program was still warranted.

As our son grew older, it became clear that he was significantly developmentally disabled, both physically and intellectually, and whatever denial we were still holding onto, like the edge of a pool before a jump, came to an end. Once swimming in the deep end of the pool, to continue the metaphor, we encountered a whole new world that we never knew existed. Inside jokes, a new vocabulary, and frankly a whole different outlook that was more open, certainly quirkier, and less judgmental than the “typical” world.

In some ways, having a child with physical disability is easier than with other, more “invisible” disabilities because it is so obvious.  In helping to create HaMercaz, the one-stop program for Jewish  families raising a child/teen with special needs in Los Angeles, I met a few mothers who would warmly greet me at a family event and then whisper in my ear: “Please don’t use the word ‘special needs’ around my son. He doesn’t even know that he has a diagnosis.” More than one religious school principal has commented that parents often fail to disclose that their child has a learning disability, until the teacher calls up about a behavior or school work problem.

This issue of trying to “pass” is made worse when there’s deep stigma and fear of isolation. For most well educated parents, having to accept that your child isn’t going to graduate with a diploma from a high school, let alone college, is almost impossible to accept. And so some kids are placed in classes or schools that aren’t a good match for them, where they can’t access the services they really need. Sometimes, over-achieving families want all their children to participate in the same high-level academic program, even if their younger child with special needs lacks the capacity to keep up. The social situation can be even tougher, since most typical kids have learned along the way to be kind (or at least to ignore) those with disabilities but will still bully and ostracize those who are “weird”.

As a community, we can help parents and other family members pass through the denial stage by gently showing that we care, and are non-judgmental in our approach. Support, friendship and small acts of kindness can help make the journey that much easier for everyone.

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