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.
Photo courtesy of Missy Miller