Why I Feel Sad for Families With Special Needs After the Election
I’ve seen article after article and social media posts galore telling people who voted for Hillary Clinton to get over ourselves and stop crying.
I get it, it’s an election result. There’s nothing I can do but accept it and move on. Believe me, I’m working on it. I’ve remained connected with all my friends no matter who they voted for, and am continuing to seek understanding of people who think differently than I do.
And that’s why I decided to write this. I did a lot of homework regarding this election. I have strong beliefs that affected my vote, just like many other people. At the end of the day, I made my decision for many reasons, but the one I want to discuss today is disability policy.
When I read this article in Complex Child Magazine, I was convinced. My son, Benjamin, has complex developmental and medical needs. His needs are a mile wide and several feet deep. We have been on the waiting list for the Children’s Waiver Program for about 16 months, with no end in sight. The Children’s Waiver Program gives families support to give needed care to their children with complex needs, and supplies paid, qualified respite providers. Ben’s score qualifies him, but the scoring system gives weight on severity, so it would likely be better for us if Ben’s needs were a foot wide and a mile deep, rather than a mile wide and a foot deep. Whatever the reason, we wait.
I’m not sure how, I’m not sure why, but Hillary Clinton recognized how much of a concern this is, and had a plan to address it.
Part of Clinton’s 4-point disability plan is to expand support to allow people with disabilities to live in integrated community settings. She would also provide tax relief for caregivers, and guaranteed 12 weeks of paid family/medical leave. Clinton strongly supports theOlmstead decision that allows people with disabilities to live in community settings, and plans to ensure that states are meeting their obligations under this decision. Her autism plan and her support of the Developmentally Disabled Act would expand support services at home for all children with disabilities, especially support services to caregivers.
As a caregiver who frequently lives with fatigue and struggles against burnout, this meant a lot to me. Enough to secure my vote for Secretary Clinton.
As a person who desperately wants to see fewer abortions, this also made sense to me. Pregnancies with prenatal diagnoses of Down syndrome have a high rate of abortion; differing studies cite between 67 to 90 percent. It makes sense that if families had increased paid medical / family leave, services at home, and support to caregivers, it would be easier for already strained families to welcome children with Down syndrome into their lives.
But mostly I’m sad for those of us already there. The families I know who are struggling to get insurance coverage for therapies, the families who are racking up miles and miles going to appointments and therapies and slowly burning out. The families whose kids have significant medical needs, and struggle to meet their work obligations, pay the bills and give their kids the care they need.
As a mom who has felt invisible, has struggled to get adequate caregivers for my children, and never has them often enough, being seen by a presidential candidate who considered us valuable enough to have a thorough plan to help me and the families I know gave me hope. That hope is now lost, and for families who have children with special needs, that is reason to be sad.
Follow Alethea at Ben’s Writing, Running Mom.
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