Last week, I participated in the Latino Leaders White House Conference Call with President Obama, Cecilia Muñoz; Director of the White House Domestic Policy Council, and Jon Carson; Director of the White House Public Engagement.
The main discussion was all about #My2K and the impact that this tax increase may have on middle class families: it essentially means taking $2000 out of our pockets. $2000 is an important number for my family. Raising two kids is not an easy or inexpensive task for anyone, much less so when those two kids have special needs.
When the President spoke, he talked about the importance of speaking up for the things we consider important. He reminded all of us that our voices are unique, and made me think and believe that my voice is powerful and deserves to be heard. I have two kids with Down syndrome, so in top of my concern for the proposed tax rise; all those words about being brave and loud reminded me that’s there’s a lot to do in my small world.
The last couple of months have been tough for us. We have been working hard to keep the kids in a High Academic classroom with opportunities for inclusion, but they don’t seem to be functioning highly enough to stay there. I understand that their performance may not be adequate for the academic standard of that class, but I’ll never understand why the only other option is a Life Skills classroom with no opportunities for inclusion or interaction with the real world.
So, seriously, #my2k is as important to me as my kids’ education. And from that conference I got the idea to start my own campaign and hashtag, #my2kidseducation. So since it’s Christmas, I’ve started my campaign by sending President Obama a letter as if he were Santa Claus:
Dear Santa Obama:
I know you’re pretty busy at the White House trying hard to restart the economy, avoid middle class tax increases and create jobs for all those who have been hit by the recession during the last few years.
I know you have much more important things to do than reading this letter from a crazy mom who still believes that no matter what diagnosis a kid may have, he still deserves the same learning opportunities as everybody else. But since, at this time, you are not acting only as the President of United States but also as Santa Claus, I’m sure you’ll have the chance to read my letter and all the others that you’ll receive on this special time of the year.
We are one of those middle class families that may be affected by the tax increase. But more than that, we are one of the families that belong to the 10% of the world’s population living with a disability, and one of the 50 million living in the United States.
So for Christmas of this year, I would like to ask you for:
- More education choices for our children with special needs. I know you have invested more than $19.9 million in grants to help prepare educational personnel to improve services and results for children with disabilities. But the problem is that this money has not been used to promote inclusion and is instead used to promote exclusion with the creation of special classrooms that limit our kids’ opportunities for socialization and exposure to the real world.
- We need healthcare options for families based on disability, not on family income. Paying for health insurance for a child with special needs is as tough as qualifying for Medicaid through SSI (Social Security income). A middle class family can hardly cover disability expenses, but they don’t qualify for Medicaid. Most families raising a child with special needs cut their incomes in half so one parent can stay home and become the permanent caregiver of the child. I’m not complaining; I’m grateful to have my kids, but sometimes they need exceptional help, and that can be cost-prohibitive.
- Single mothers of kids with disability need more home-based work opportunities. Only God knows how hard it is to find a good job and also to find sensitive people who understand that running to the doctor many times a week is not a choice, it’s our obligation.
- Motivation and independence through the creation of adapted jobs. Every company in this country should be encouraged to hire people with disabilities. They have unique and wonderful abilities to share, and if there are 50 million families living with a person with a disability, I’m sure there’re also many doors that are ready to be opened.
I think many families feel as I do and will be happy to receive these gifts during the coming years. At Christmas, money can buy most of the presents our kids dream of. But for all the others, the gifts of opportunity, inclusion and the ability to thrive in the world, we need the help of our leaders and the magic and illusion of Santa Claus.