I am calling on all parents of children with autism to recognize the importance of our votes. We have to hold our legislators accountable because the decisions that they make can have a huge impact on our families.
Several states will be holding primaries for the midterm elections today and I encourage all of you to head to the polls and cast your vote. This is the first step in ensuring that we elect or re-elect federal, state, and local representatives who care about families. If you have difficulties getting to the polls, please check out the absentee voter eligibility requirements in your state.
Next ask yourself: Who is running for office in my state? What have they done (or plan to do) for families of people with disabilities? What is their approach to special education and services for our families?
Here are some reasons why you must vote:
Insurance and Services
Earlier this summer the Centers for Medicare & Medicaid Services (CMS) mandated states to cover Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services. This coverage will be for individuals with autism who are Medicaid eligible up to age 21.
This is good news. However, I know many parents who are having difficulties getting Medicaid for their children with disabilities under the waiver because their children are not “severe enough” to qualify. Resources may be scarce but just because a child has a high IQ that does not mean that they are not struggling in other areas. (Please remember that Medicaid is also administered on the state level and so is the decision to expand it.)
Even when families can make it through the complicated waiver process, the wait time to get services can be ridiculous. No family should have to wait for five years to get respite services. In New York, the waiver is administered by the Office for People with Developmental Disabilities (OPWDD) and the commissioner who runs this agency is appointed by our governor, Andrew Cuomo. Cuomo is up for re-election. Use this scenario to connect the dots in your state.
Then, we have Autism Insurance Reform that is making the rounds nationwide at a snail’s pace. Many parents are having a difficult time getting coverage for services for their children. Parents should not have to wait for months to get psychiatric care or Applied Behavior Analysis (ABA) for their child because of red tape and long wait times. Please visit the Autism Speaks’ advocacy page to check the status of autism insurance reform in your state, and then put pressure on your representatives to act now.
One piece of legislation that I want all of us to keep an eye on is the ABLE ACT being proposed by Senator Charles Schumer. If passed, this law would allow individuals with disabilities to have tax-free savings accounts. Want this legislation to pass Congress? Vote!
Special Education
The interpretation of the Individuals with Disabilities Education Act (IDEA) law in school districts nationwide can lead to huge amounts of stress for families as they try to ensure that their children are receiving an appropriate education.
Some school districts are better than others in regards to knowing what is appropriate for special education students under IDEA. Then there are those who blatantly ignore the law, which ultimately results in our children being shafted.
In New York City, the Department of Education is run by the chancellor who is appointed by our mayor. Our mayor Bill DeBlasio was elected into office this past January. Find out how the Board of Education works in your district. Who appoints the decision makers? Is this person up for re-election? Use this scenario to connect the dots in your area.
BMWK: It is time for all of us to make our legislators realize that they work for us. We vote them in and we can vote them out.