Sibling, Speaker

How To Get People to Care

Picture of a white adult male with autism leaning on the counter and his head being held up by his hands

I keep getting increasingly annoyed with the community I am in and now more than ever. I have discussed many times on this blog about the local leadership training through the chamber of commerce and their lack of talking about disabilities, in particular developmental disabilities. According to the CDC, developmental disabilities make up 17% of the population. In Manatee county alone, that would be 68,000 people.

I attended a leadership retreat back in September. I needed this time to cool off before writing this post. People with disabilities were not mentioned except for a 20 second sound byte about a local coffee shop Rise and Nyes. Rise and Nyes are not in Manatee county. Superintendent of schools didn’t mention anything in her presentation and when confronted, she talked in circles just like when I asked why wasn’t special education brought up during education day. I then asked what was the percentage of students with an IEP (individualized education plan) and that was 20%. So, once again people with disabilities continue to be ignored. New legislation came down that Florida is no longer allowed to use restraint and seclusion in public schools. I asked what the plan was and the answer was brief and the state has to provide training. That is just in the public schools. When I did my ride along with a sheriff, he admitted he would not be able to tell the difference between someone on drugs and someone like my brother not responding to commands. I can keep going.

I hounded the chamber until I could get a meeting with their public policy rep. My question to them was why should I continue to pay membership? Everything I stand for is not supported. I will not be going back to that retreat again unless things change. Why does this have to be so difficult? Not only for me but other families in this community?

I came with solutions. That is what leaders do.

  1. Funding the Medicaid Waiver appropriately. This would create jobs. Parents with adult children with disabilities can go to work if there is proper programing. That is more people paying taxes and putting money back into the community. Not to mention, creating jobs around the person with the disability- direct support staff, therapies, and so on.
  2. Employment. When the chamber asked what they can do I was quick to say, hire someone with a disability. Be a role model. Not holding my breath on this one. If people who can work (not all can like my brother), then they don’t need waiver funds.
  3. Decrease the amount of abuse and neglect by paying support staff a livable wage. Most I know work 23 jobs, get no sleep, have families. These are the people taking care of our loved ones. If they can’t take care of themselves or are in constant stress mode, they can’t take care of other people. Remember Maslow?
image of Maslow’s hierarchy of needs

All sectors of the population are impacted by disabilities. There is not enough housing. This includes group homes as well as affordable housing for those that can work. I discussed education above. I know so many families that are now homeschooling in this area because of the maltreatment of their children as well as lack of support from the schools. Workforce development. Everyone is hiring. Hire someone with a disability. Health care is impacted by many qualifying for Medicaid and Medicare at a younger age. And, the inequalities to equal access to quality care. These people age and will need the same aging services. Child welfare is impacted and have a higher rate of removal and impacted by trauma from maltreatment. Trauma also impacts mental health.

I don’t know how to make people care. Until you live it, you don’t get it. I will take any suggestions on how to make our voices heard.

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