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Monica Pickard spent twenty years of her adult life as a child care provider. During that time, with the help of her husband, she raised her son who has been diagnosed with Autism and Developmental Delay. She learned to navigate a world that was new to her – the world of Special Needs. She now shares these experiences and the wisdom they taught her, with love and heartfelt compassion for the human condition.

Thursday, June 22, 2017

An Open Letter to American Lawmakers

Dear Federal and State Lawmakers:

I may or may not be your constituent, but no matter where we each live, your votes make a huge difference in the life of my son. He is 28 years old, has intellectual disabilities, and no siblings. After his father and I are gone he will most likely be reliant on the Federal and Illinois budgets. He works at his volunteer business, collecting and delivering donated items and food to area food pantries and thrift stores. I help him with the tasks he is unable to perform himself – which is most of them. It keeps him busy and away from the television set. It gets him out into the community and gives him a purpose in life. Plus, he enjoys it.

Joshua Pickard
No one is willing to give him a purpose through paid employment. He is not the pull-yourself-up-by-your-boot-straps kind of fellow that politicians seem to admire. He wants to control his own life and destiny. Unfortunately, he is trapped inside his incapable mind. He will never want to live in an institution. I know that for certain. He probably won’t want to live in a group home, either, but that is probably where he will end up after we are gone. Hopefully, it will be more family-like than an institution. For certain, it will be more cost effective than an institution. But, as a lawmaker, you know that already.

I know you care about people, that your votes are never intended to be cruel, and are never intended to hurt people. I know these things are true of every action you take in your job, without ever having met you because I have faith in the goodness of human beings. Unfortunately, anytime a vote is cast that cuts Medicaid or other social services, it is cruel, intended or not. The AHCA bills in their current form are cruel, intended or not. These bills drastically cut the funding for Medicaid and move Medicaid funding from mandatory spending to discretionary spending. My son’s life is not discretionary. These bills are not healthcare bills, they are wealthcare bills. If I could, I would fund his needs myself. Lord knows I wish I could. We are not sucking up tax money because we want to. We would prefer our son be independent and capable. We not only feel the sting of his disabilities, we feel the stigma imposed on us by the rhetoric of politicians. This rhetoric gets repeated in articles on social media. People say they distinguish between our situation and the people cheating the system, but the shared articles only create support to cut the funding our son needs.    
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Ronald Reagan understood the plight of people with disabled children when he signed what became known as the Katie Beckett Waiver, in 1982, so all disabled children could receive Medicaid supports. There have been Governors across America who have expanded Medicaid so that disabled people can get the help they need to live as freely as possible. In many cases, Medicaid supports them in obtaining work in paid jobs so they can help support themselves. These governors recognize that people are not discretionary; that people matter, whatever their station in life.

People with intellectual disabilities have been abused, neglected and have even died due to lack of funding. This is the reality. In an investigative report, the Chicago Tribune found in Illinois, “at least 42 deaths linked to abuse or neglect in group homes or their day programs over the last seven years.” This same story told about a man with Cerebral Palsy who was beaten almost to death, in his bed, by a housemate, when only one caregiver was scheduled to care for eight men in that home, simply because Illinois refuses to properly fund Medicaid. Illinois and states across this country have been able to help more people with disabilities by closing institutions, saving millions of dollars. And yet, the AHCA will gut Medicaid. People will suffer because of that. It is cruel. I am afraid for the individuals living in group homes across America and for my son’s future.
Me and Josh in our "retelling our story" shirts
The constant threat of cuts to these programs feels like terrorism to me. Others are also terrified. Parents who are nearing death have murdered their mentally disabled children and then committed suicide because they are afraid of what will happen to their children in underfunded homes and institutions. That is what sometimes happens when people are terrified. After hearing of the abuse, neglect, and deaths, can anyone make an argument that we should not feel terrorized when these cuts are threatened, or worse yet, made?

It is cruel. I know you don’t like hearing that. I know you do not intend it that way, but that does not make it any less cruel or terrifying. Recently, someone said to me, “We only need seven more votes.” I thought, yes, seven votes to stave off this threat for now, but how many hearts and minds need to change for this threat to go away permanently? We need your heart and mind, your compassion and your intellect. Typically, the argument lawmakers use is that they want to care for these people but there is not enough money to fund these programs. You might even say the problems I mentioned above are not a matter of funding, but regulation. There probably do need to be better regulations, but without proper funding, those regulations will only mean fewer people get services. People with disabilities are not going anywhere. Their caregivers are not going to shut up and go away. I certainly will not be silent.

Let’s get truly honest now. There is enough money. You know it and I know it. At the Federal level, there is always enough money to give the oil companies a subsidy they don’t need and to bail out the banks. Never once has that been an issue. Not even during the worst economic crisis since the Great Depression. This is a matter of priorities, not a lack of money. We need to start putting our priorities and our money where our morals are. The taxes we pay are supposed to be for the good of the people - all the people, not just an elite few.

We are now entering our third year without an Illinois budget. The same snake oil is being peddled here, too. We just don’t have the money. I was buying it, as are many others. Recently I learned that in a special session to try to pass an Illinois budget, Illinois taxpayers get to shell out approximately $40,000.00 a day to Illinois lawmakers because they have failed to pass a budget during the last two years of regular sessions. I also learned recently that the Illinois “legislature and Governor found BILLIONS of dollars to preserve 1,500 jobs at two nuclear power plants at great taxpayer expense… This bailout was obviously a bipartisan effort.” That quote was taken from Testimony Submitted to the Joint House-Senate Human Services Committee, On Abuse and Neglect Taking Place at Group Homes for Individuals with Developmental Disabilities, by Laurie Jerue and Ellen Garber Bronfeld, Co-Founders, Illinois Parents of Adults with Developmental Disabilities Unite, Chicago, Illinois, December 13, 2016.

Obviously, we have the money. Jobs are important. The jobs of the caregivers working in group homes are just as important as nuclear power plant jobs. They currently do not make a living wage and must rely on government assistance just like the people they serve. They wipe the bottoms of adults with disabilities, they keep them from abusing each other, they cook their meals, they give them life-saving medications, they are expected to keep all the residents safe with very few staff on-site and to do it for an unlivable wage; little more than $10 an hour. That is cruel. And I’m no longer buying the argument that there is no money to pay these caregivers better.

Politicians want to give huge tax cuts for the wealthiest Americans and tax increases for the oldest Americans in the AHCA, so let me be crystal clear: Cutting Federal and State funding for needed services and programs for people with disabilities is not just cruel. it is immoral. Voting for any Federal or State bill that takes anything at all from the most vulnerable people while giving more tax breaks to the people who are perfectly capable of caring for themselves is not just cruel, it is immoral. The failure of Illinois lawmakers to pass a fair budget is not just cruel, it is immoral. Failing to fully fund programs for the most vulnerable people is not just cruel, it is immoral. Failing to pay caregivers a living wage for doing a difficult sometimes dangerous job families can no longer do is not just cruel, it is immoral.

You get stuck in a party narrative. I get that. Narratives can be changed so easily. Currently, the narrative is about the takers and the makers; the freeloading, lazy folks. That story makes it hard for people like you not to cut needed services. And, whichever party you’re in, you must explain these votes to your constituents who hear and believe that story. You can put a new organizing center on that story by talking about the most vulnerable people who need these services. You can sum up the need for these services to be fully funded because it is the most compassionate and moral thing humans can do for vulnerable people. You can bring unity to your values, your morals, your religion, and your vote to fund these programs, by making the people I told you about the center of the discussion. Like Jesus did. He took the old narrative of collecting taxes to build a king’s empire and turned it on its head for those in need. When a wealthy man asked Jesus how he could enter heaven, Jesus told him to give all his possessions to the poor. That is where God is found; in those with helping those without. We don’t have to give it ALL to them. That is not the point of Jesus’ answer. The point is to stop ignoring people like they don’t matter and to start sharing our abundance.

You can frame your new story in many ways. Things you can say: The disabled life that was born deserves as much compassion as the one still in the womb. To give is better than to receive. It is patriotic to help your fellow Americans with disabilities. Helping vulnerable people is the mission of every religious person. Disabled lives matter. You can define terrorism as ‘a threat to people’s security’ and you can refuse to threaten the security of disabled Americans by funding these programs. See how easy that is? Who would argue with you if you changed the story that way? I suppose your wealthy donors might have something to say, but we didn’t vote for you to work for your wealthiest donors. We voted for you to work for us. I may not be your constituent, but your votes and your rhetoric affect my son and all your constituents with disabilities and their caregivers. Please, remember that and vote with compassion. 

Monica Pickard
Belvidere, Illinois 

#HealthCareNotWealthCare #GoodOfThePeopleNotEliteFew

If you have an opinion to share with me about this post or any other, contact me at mindchange4all@gmail.com 
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