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We Can Still Make Things Better For Kids With Disabilities

We Can Still Make Things Better For Kids With Disabilities

In the not-too-distant past, children with epilepsy, autism, Down Syndrome and other disabilities were routinely taken away from their families and institutionalized, often for life. It’s gotten better: Many individuals with disabilities now grow up with their families and have the chance to live in their communities.

But there’s still plenty of heartbreak. We’ve developed medications and other treatments and learned a great deal about how to teach children with significant neurological challenges. Still, there is a lot we do not know.

Families — like that of Missy Miller of Long Island whose 14-year-old son Oliver has refractory epilepsy and my own — still find themselves grasping about for answers. How do you ensure that an adult child with intellectual disabilities and little language will be cared for when you, the parents, are gone? How do you stop a child from having seizures or challenging behaviors?

Miller has done everything she could to help Oliver. He has tried almost twenty medications, been on special diets and endured surgery a couple of times to control his seizures. There’s an urgent need to reduce and control these because, every time Oliver has one, he not only loses some of the skills he’s worked so hard to acquire. His life is also threatened.

In recent years, there have been more and more reports about medical marijuana helping to reduce and even stop seizures in some children with epilepsy. Missy is unable to see it if might help Oliver because medical marijuana is not legal in New York state. The New York State Legislature is currently considering the Compassionate Care Act, a bill that would provide people suffering from a severely debilitating or life-threatening illness with legal access to medical marijuana.

A recent poll shows that 88 percent of New York residents think people should be allowed to use marijuana for medical reasons, as Bloomberg News reports. The Compassionate Care Act has been passed five times by the New York State Assembly but still needs to gain approval by the Senate — Senator Dean Skelos and Senator Jeff Klein, the State Senate co-leaders, have yet to allow the bill to be brought to the Senate floor for a vote.

Children with disabilities no longer have to spend their lives separated from society due to parents and advocates taking action so they can live in the community. Parents today continue their efforts: Determined to get Senators Skelos and Klein to bring the Compassionate Care Act to the floor of the New York State Senate for a vote, Missy started a Care2 petition calling on them to do so. More than 21,000 people have signed the petition to show their support so far. If the bill passes, New York would become the 21st state that allows doctors to prescribe marijuana, and Oliver will get much-needed medical treatment.

Other families have had to take drastic measures to help their children with disabilities. Brian and Meghan Wilson of Scotch Plains, N.J., have had to move to other states like Colorado to obtain the strains of marijuana they need for their two-year-old daughter, Vivian, who has a rare form of epilepsy, Dravet Syndrome, that causes her to have frequent, violent seizures. A recent report has found that the number of autistic children who required inpatient treatment has increased threefold between 1999 and 2009. A document about challenging behaviors and crisis intervention from the organization Autism Speaks says that it’s not uncommon for autistic children to have to spend one to two weeks in a hospital’s emergency room before a bed in a psychiatric or other facility is located (and before a family’s insurance company approves it).

Yes, it sounds unbelievable that anyone would have to spend that long in an ER. It has happened to families that I know. It’s testimony that, while we’re doing a far better job caring for individuals with disabilities, we have a long way to go to support them as they grow up and when they face moments of crisis.

That’s why, with my son on the verge of turning 17-years-old, I’m backing a call by disability advocates to reallocate federal spending about autism towards services and projects for adults. With 1 in 68 children now identified as being on the autism spectrum, it’s more pressing than ever to plan ahead for when they’re adults. With treatments for seizures like medical marijuana available, it’s just imperative that Senators Skelos and Klein do the right thing and bring the Compassionate Care Act to a vote on the floor of the New York Senate and make a difference in the lives of individuals with disabilities and those who love and care for them.

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Photo courtesy of Missy Miller

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56 comments

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1:13PM PDT on Aug 24, 2014

thank you

12:56PM PDT on Aug 24, 2014

thanks for a thought provoking article...there is much we can do to help the vulnerable.....but at the same time we have to realize there maybe a limit on what we can do....here in MN we are fortunate to have a good community with many options for parents who are needing to make plans for their adult children who won't be able to live with mom/dad/family forever.....

12:28PM PDT on Jul 16, 2014

There is a lot of work to be done. In the meantime, love them.

12:56PM PDT on Apr 27, 2014

and just look at what happened in Colorado and Oregon as soon as they got medical marijuana laws passed they passed laws for legalizing marijuana and now they have to retrain their officers on how to tell if a person is high, plus what about that party Colorado had to celebrate legalizing pot, there was a gun fight and 1 person was killed, are all of you stupid, YOU need to make certain that restrictions are place on medical marijuana to protect the populace from idiots who don't know when to stop

3:57PM PDT on Apr 26, 2014

I hope that one day we can have a society that understands that by helping the most vulnerable is a given. Not something that we have to advocate for or fight for every day.

5:56AM PDT on Apr 24, 2014

thank you

7:25AM PDT on Apr 23, 2014

Thank you for sharing.

9:00PM PDT on Apr 22, 2014

Thank you. There's a lot that can be done and time will be on our side if we're willing to be thorough, compassionate and take action now.

11:17AM PDT on Apr 22, 2014

There was a story in today's paper about 2 teenage girls (sickos) in Maryland who "befriended" an autistic boy at their school. For laughs they held a knife to his throat & also tried to make him fornicate with the family dog while taking photos. They also told him to go out on thin ice to fetch a ball. He fell through twice & they didn't help. Again recorded. They threw him in the trunk to go home so the car wouldn't get wet. They also recorded kicking him in the groin & dragging him by the hair. The boy was so "high functioning" that he couldn't understand why they might go to jail & wanted them to drop the charges against his "friends" yet the girls' lawyer said "he is hardly so low functioning & vulnerable as the media suggests". The lawyer is a slime ball it seems. He compared it to a university hazing....the problem is this boy IS handicapped, a minor & not a university student & the boy could have died in the icy water. The girl LAUREN BUSH is no doubt a future criminal & probably a psychopath.
So much for helping the disabled. She should be put away until she needs a walker.

10:54AM PDT on Apr 22, 2014

There are so many of these so-called "invisible illnesses" - with even more being found continuously - that it's so important we learn all we can about them! Individuals suffering from things like epilepsy, PTSD, learning disabilities, cancer and autoimmune diseases suffer enough; let's do our best to understand what they're going through so we can better empathize and assist.

http://www.thepetitionsite.com/475/846/653/educate-yourself-and-others-about-invisible-illness/

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