Mental Disability Discussion Presents Opportunity for Real Change

Like everyone on December 14, when I learned of the killings of 20 children and 7 adults a combination of heart break and horror washed over me.  Who could do such a thing?

We didn’t know much about the shooter, Adam Lanza, and we didn’t know his mental health status, yet, there were many assumptions made about it. The earliest news reports pegged him as a young man with autism/asperger’s syndromes, others speculated about the various spectrum of mental illnesses.

While there has been no link established between autism/asperger’s syndrome and extreme violence against others, however, in the wake of this tragedy, Adam’s story, present an opportunity for dialogue and real change as it applies to mental disabilities.

I grew up with a family intimately affected by mental disability. My parents who were newly settled immigrants, were still working and putting themselves through school raising me and my younger brother.  My brother was a healthy newborn, and a gregarious infant meeting his developmental goals until noticeably he grew inexplicably silent. Finally, the doctors told my parents, it was autism, a developmental disability that affects the brain’s development of social and communication skills. They did not have endless resources or even extended family members to help them and so through my childhood, I watched my parents fight patiently and ardently for my brother. They tirelessly worked to make sure he could eat real food, when all he wanted to eat was melted ice cream and that he could sit in public with the rest of us without violently rocking back and forth. My parents and teachers worked on his communication, as people with autism can be so locked within their own internal world, they are unable to verbally and physical communicate. They achieved slow success, first through sign language, then eventually, finally, through words.

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My brother progressed through public school in the special education programs in our county in Virginia. He did increasingly well but we all knew he would never completely be able to live an independent life. When he finally reached 21 years old, per the law, he was no longer able to use the public school system programs.

My mother, who also worked as a nurse  spent many untold hours with  my brother’s caseworker and with social services. Watching her exhausted but determined diligence to ensure his access to needed services was sad and infuriating all at the same time but not unlike those in her situation.

I live in Virginia, a state where Medicaid funding was slashed tremendously last year.  Enacted in 1964 under Title XIX of the Social Security Act, Medicaid provides medical services to low-income people including those with disabilities and mental illness.

In addition to this basic care, Medicaid funding directly funds home care and community-based residences, for those, like my brother, who are unable to care for themselves. Many Virginia parents and other family caregivers like my mother still need to work. Unable to afford expensive private assisted living and residential facilities, these Medicaid funded residences provide families needed relief of knowing their loved one is cared for when they have to be away from home.

However, these consideration of families appear to be irrelevant in a debate always fraught with political fighting particularly in recent years. House Republicans led by Paul Ryan, tried to change Medicaid so that states could minimize eligibility. Democrats vetoed the idea. In the 2012 Presidential election, Mitt Romney, who also selected Ryan as his VP, largely championed Ryan’s plan, while President Barack Obama, pushed back emphasizing those disabled and elderly people in need of Medicaid

Not to say this discussion is not relevant, the intense recession of the last year has increased the number of individuals on Medicaid’s rolls, however dropping those without a safety net shouldn’t be the immediate answer. There is a tendency to politically demonize those who use Medicare, Medicaid or even disability as welfare kings and queens working to game the system. When in reality many of them are like my mother, working hard to preserve their families.

In the end, expanding Medicaid, not limiting it, will be the only way to meet need. Without it, working families are in a bind and would be forced to turn over disabled and elderly people to state institutions, an even more expensive proposition for government. I challenge those elected officials that believe in family values to enact policies to empower and preserve families. For those who don’t have a family member who is elderly or disabled and of limited means, don’t believe the welfare queen hype. And for those like my family, be counted, write a letter to the editor, get to know your legislators, because people’s lives depend on it.

 

 

Atima Omara-Alwala is a political strategist who has staffed seven political campaigns and other progressive causes with a focus on women’s rights and political empowerment.  Currently, she is National Vice President of the Young Democrats of America and she also serves on the boards of the DC Abortion Fund and Planned Parenthood of Metro Washington Action Fund.  Follow Atima on Twitter @atima_omara.

 

 

Photo credit: just.Luc via photopin cc.

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