Why Autism Parents Need to Vote

BY: - 9 Sep '14 | Parenting

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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.

About the author

Kpana Kpoto wrote 38 articles on this blog.

Kpana Kpoto, also known as Miz Kp, is a special needs advocate and blogger. She provides resources and support for autism parents through her blog, Sailing Autistic Seas and her support group, Bronx Parents Autism Support Circle. Kpana lives in New York City with her husband and only child, six-year old "Angel" who is conquering autism one milestone at a time.

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Blended Families Week: Why Good Intentions are Not Good Enough

BY: - 16 Sep '14 | Blended Families

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Lamar and I just celebrated 9 years of marriage. And while I can’t say that the last nine years have gone by without any drama or trials, I can say that marrying Lamar has been one of the best decisions that I’ve made in my life. He’s not only been a blessing to me, but he has also been a blessing to my children ….our children.

We were recently asked what has been one of your major challenges in our marriage.  And hands down, we both said the challenges that come with being a blended family.  Things were fine at first.  But when the problems came…they hit us like a ton of bricks.  I’ve never experienced that kind of pain before. As the biological mother in this situation, it hurts you to your core to see your children hurting and your spouse hurting.

When we were asked, knowing what we know now…what would we do differently when we prepared to get married?  I said: I would have prepared more for being a blended family.

You see, Lamar and I thought we did everything right.  We discussed all of the major topics that you should discuss before getting married: finances, religion, where we would raise the kids..etc.  And we even did pre-marital counseling with the pastor that married us. But, we did not prepare ourselves specifically for being a blended family.

And I know that it’s impossible to prepare yourself for all of the challenges that may come your way.  But, the odds of your family succeeding increase when you are proactive and when you prepare yourself.  Here is what Ron L. Deal says on page 12 in his book The Smart Step-Family: Seven Habits to a Healthy Family:

There are many hidden challenges in stepfamily life, and you need to be as prepared as you possibly can.  Taking off your blindfold and seeing clearly the journey ahead is the best choice you can make.  Indeed, your decision to form a stepfamily by marriage needs to be an informed choice; otherwise you may regret the decision once the challenges hit you head-on.

So how is that we still claim to be happily married, even with all of the challenges we’ve faced in our family?  We took the blindfolds off. 

“You can not afford to go into marriage armed with “better than last time” intentions.  The process demands that you know and understand more than that.” – Ron Deal, The Smart Step-Family

With blended families, it’s not enough to have good intentions. You’re going to have to put in the work in order have a healthy stepfamily.  And that’s what we did. We read books, we’ve taken classes, and we’ve sought the mentoring of other couples that now have thriving stepfamilies.  So, my advice to you, whether you’re thinking about forming a stepfamily or you’re already in one, go today and find the resources that you need in order to grow healthy relationships in your family. If you don’t know where to start…here are some of our favorite blended family resources.

BMWK – if you’re in a blended family, please share with us the resources or tools that you have used for your family.

It’s Blended Families Week on the site.  Please click here for more articles and resources.

About the author

Ronnie Tyler wrote 524 articles on this blog.

Ronnie Tyler is the co-creator of BlackandMarriedWithKids.com and co-producer of the films Happily Ever After: A Positive Image of Black Marriage, You Saved Me, Men Ain't Boys and Still Standing. The proud mom of 4 has been selected by Parenting Magazine as a Must-Read Mom and is one of Babble's Top 100 Mom Bloggers.

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