Happy Independence Day! I love the Fourth of July and not because I love fireworks. I love it because I have always loved American History and I have a deep-seated belief that we live in the greatest country in the world. I don’t believe it is by accident that I was born in America and have been afforded these great freedoms. I am deeply grateful for those who have died and fought and sacrificed so that I can enjoy these great freedoms. And I know that it is all because of God’s grace.
A few years ago I wrote a blog called We the People May Want a Pink House. Those who follow or know me know that Rachel’s proclamation of wanting Senator Moran to co-sponsor the ABLE Act because she wanted to live in a pink house became a symbol of her march to independence. We are grateful that both Senator Moran and Senator Roberts and our Congressman Kevin Yoder went on to not only sponsor but champion the ABLE Act. The passage of the ABLE Act is one of the proudest moments of my life for me and for my family. Passing ABLE was significant. It was a big deal. It will assist Rachel in her march to independence.
ABLE should really help those with younger children who will have many years to save in their accounts. On one hand $14,000 per year is not much when you are talking about a lifetime and on the other hand, most people I know don’t have $14,000 in petty cash to deposit in an ABLE Account. I mean there are other children, retirement accounts, aging parents and lives to be lived. For many people with children and family members with disabilities, there are significant medical costs not paid for by insurance, extra therapies not paid for by anyone and those who are self-employed who struggle to find insurance for their child with a disability or themselves because of pre-existing conditions. Down syndrome is considered a pre-exisiting condition. Many parents have had to leave their jobs to be able to assist in caring for their child or loved one with a disability, too. So for many of these families, there may be no money to save in an ABLE account.
Rachel just became an adult. She is eager to tell you that. She will graduate on May 20, 2018. We are having a big party. She wants to go to college. She wants to work. Her career endeavors have changed some in the past year. She thinks maybe she wants to work in a nursing home or with children at a hospital or for Senator Roberts (they opened that door) or the Mayor. Oh and then there’s AMC Theatres. That’s where she should work because she will need a discount to go to movies. She loves movies. All of this is after she is on Broadway or a Disney show. I’m pulling for a job as a greeter on a Disney Cruise,
but I think if she could earn money as a professional party greeter, she would be rich. She wants to get married. She wants to live in a pink house. She’s been talking more about cars lately and reminding her daddy that they need to get her driverless car.
More than anything, she just wants to be like everyone else. Her friends get this. Hanna and Allie even went to DC in April and told Members of Congress this – Ordinary Advocates Matter & Inclusion Works.
She wants to be independent. She wants to be respected and she wants to live with dignity. Rachel has a lot going for her, but like everyone she needs a little help. Right now, she can’t drive. Everywhere she goes she has to depend on someone else to get her there. She needs a friend or a parent to get her there. Sometimes that’s not just inconvenient it is prohibitive. Rachel is capable, but she needs some support to be able to be independent. She needs the services and supports provided for by the optional Home and Community Based Waiver (HCBS) Services through the Medicaid Waiver. She will depend on the HCBS to be independent. Without the services and supports provided, her options will be more limited and her ability to work and live independently will be seriously compromised. We have friends whose parents will be forced to quit their jobs if they lose their supports.
Practically speaking I can tell you when you look at $834 billion in cuts (plus the President’s proposed budget cuts), implementing per capita caps and putting the burden of making up the difference on the state, something and someone will lose needed services and/or supports. I manage the budget at my house. I’ve managed budgets for a couple of non-profits and a couple of grants. I know that in reality when the funds are short, I cut the optional budget item.
Today, I am reiterating my points from my blog a few weeks ago, AHCA Jeopardizes Rachel’s Pink House, and reminding all of you that some our country’s most vulnerable, those who often need others to speak on their behalf are the ones who will really lose if the current version of the healthcare bill passes. I will also reiterate the comments I made in the nice article by Andy Marso in the KC Star a few weeks ago, Anxiety Over GOP Health Bill Grows, this is not a partisan issue.
People who know me have heard me save in regard to many situations, we need to learn to play together in the sandbox. We encourage our children to do this and that’s what our leaders need to do. They need to get in the sandbox and share ideas, concerns and do the right thing for the American people. Do the right thing for the Rachel’s of the world. Her independence and her pink house may well depend on it. Rachel is a great negotiator. She could help, and maybe she’ll have a sandbox at her pink house.
Rachel approves this message and has one of her own to add.
Happy Birthday America! I am proud and thankful to be an American.