Showing posts from May, 2017

Repost: All the parenting hats

Re-posting from my other day job.

All the Parenting Hats

Some days it feels like being a parent requires me to be a general education specialist, a special education expert, a psychologist, a neurologist and neuroscientist, a geneticist, an education law specialist, a diplomat, and a hunting dog all at the same time. It is exhausting. But it’s what you do. Will there be a time when I’m not going to advocate for my children and others like them? When I’m dead maybe.

My kids want to go to college. That means it’s my job to make sure everyone does their job to give my children that opportunity. Sometimes that means holding my children to a higher standard than others have for them. Sometimes that means cutting them some slack. It’s a delicate balance that requires knowing the child in question and what best motivates them.

Mostly it requires being present and aware of my child and their needs. It means setting in my mind that they can achieve their goals and working alongside them to make s…

Medicaid Morass

The Medicaid system is byzantine. There is no way around that fact. Issues with Medicaid have plagued those of us living with disability for decades. But it’s nice to see that others are beginning to notice problems with Medicaid to wit, “The new healthcare bill could worsen the stigma of special education.” Of concern here is the possibility of a loss of $4 billion over the next 10 years earmarked for schools to help children with special needs. Without Medicaid, support services as well as educational outcomes for children with disabilities may suffer. In a report from January of this year, AASA, the School Superintendents Association, made clear how dire the situation could get. Health and wellness, therapy, and nursing services will be on the chopping block, as will the jobs of staff whose salaries are paid either in part or in full by Medicaid reimbursements.In a letter sent to top lawmakers on May 2, a non-profit organization comprised of members from the nation's school dis…

Town Hall Fun

I appreciated the opportunity to take part in the live broadcast town hall on Monday, May 15, 2017 with my congressman John Katko. The event wasn’t earth shattering or game changing. It was a good start for a new way to do public dialogue with elected officials. I’d love to get state and local elected officials in that kind of format.
Here are the questions I had prepared for the evening but did not get a chance to ask. (News coverage here, here, and here. Plus protest coverage here, here, and here.)
Medicaid Medicaid fraud prevention measures do a poor job of preventing fraud. Instead they make it harder for people who need services to get them. How would you address this problem at the federal level? Medicaid reimbursements to service providers are notoriously low. This leaves people with limited options for care. It is a perennial problem for people with disabilities who need specialized care. Central New Yorkers are currently faced with a limited number of providers forcing families t…

The Death of a Child: Blame shifting and lack of transparency

8-Year-Old’s Suicide Leads Cincinnati School to Release Video Showing Bully Attack
This is the stuff of parents’ nightmares and it hits close to home for me. I had a similar experience with one of my children. It involved school staff rather than another student. My child is alive and well but I understand the outcome for my family could have been what Cornelia Reynolds is now experiencing. The school made no mention of the incident to the boy's mother, Cornelia Reynolds, only telling her that he fainted, said Jennifer Branch, an attorney representing Reynolds, adding that they learned about the surveillance video months after the attack in January.But because the mother didn't know what happened, the doctor at the hospital didn't either, which changed the nature of the medical examination, she said. "If she had known he had lost consciousness for over 7 minutes, that is a critical detail for a medical professional to know," she said.Reynolds found out about the bu…

Mother's Day Tenacious

Mom has taught me a few tricks over the years. The most important lesson she has taught me is to fight for family. Here's to many more battles fought and won.