Noah's Dad

As a father of son born with Down syndrome, I’m angry, sad, and hurt after reading a recent article in The Miami Herald about the State of Florida “warehousing” (yes, warehousing!) a large number of children with disabilities in “hospital-like” institutions, and their follow up article entitled “Florida’s way: Nursing home profits trump sick kids’ special needs.”

“Hundreds of children are currently segregated in nursing facilities throughout Florida. They are growing up apart from their families in hospital-life settings…they live segregated lives – having few opportunities to interact with children and young adults without disabilities or to experience many of the social, educational and recreational activities that are critical to child development.”

Unbelievable, right?

The Justice Department Demands Justice For Children With Special Needs, and Their Families.

In fact what’s going on in Florida is so atrocious that the United States Justice Department is stepping in. In a letter to the State of Florida, U.S. Assistant Attorney General, Thomas E. Perez, outlines the results of a federal investigation which shows how the State is in violation of the Americans with Disabilities Act.

“The State’s reliance on nursing facilities to serve these children violates their civil rights and denies them the full opportunity to develop bonds with family and friends and partake in educational, social, and recreational activities in the community.”

I’ve embedded the full letter below so you can read in its entirety if you’d like. (Warning, it’s heartbreaking, and will no doubt make you angry.) If you don’t want to read through the 22 page letter, feel free to scroll to the bottom of this post where I’ve outlined some of the most telling parts of the letter. I’ve made the embed code embeddable, so if you’re a blogger, and would like to include the letter on your site, you’re free to do so, simply copy and paste. Be sure to let me know if you have any problems reading it, or embedding it.

So what’s the State of Florida doing that’s so wrong, and just how are they violating the civil rights of hundreds of children living with special needs?

Keep reading….

The Americans With Disabilities Act Changed Everything.

In 1990 the Americans with Disabilities Act was passed into law. The ADA, among many other things, states that children born with disabilities or other medical conditions must be allowed to receive care and treatment in a community setting whenever possible. Not in ‘warehouse” like environments like what was done to children in previous generations, and is still a very common practice in the Ukraine and other Eastern European countries. (Which, by the way, is way I’m such a fan of organizations like Reece’s Rainbow who are making an impact overseas by helping to rescue children forced to live in these environments.)

In case you weren’t aware, there was in time in this country where children like my son (who wasborn with Down syndrome) were basically forced to be raised in a mental institution! Can you even imagine a small baby (regardless of if they were born with a disability or not) being stripped away from his mommy and daddy and forced to live in a mental institution? It causes tears to steam down my face just thinking about. But it really happened. Right here in the United States of America.

These children received little (or no) early childhood intervention, little (or no) formal education, and no real love and support. They were cared for by people punching a clock. Their job was to simply make sure that these children ate a few times a day, and remained medicated enough so that all they could do is just lay in bed.

These children did not receive proper medical care, did not get a chance to build and develop meaningful relationships, and did not get the opportunity to live in a loving and supportive home which is so vital to a child’s success. It was a tragedy then. And it’s a tragedy now.

I believe this is the reason you don’t see to many older people with Down syndrome out and about today. Don’t get me wrong, I’ve received a few emails from families who went against the State 40-50 years ago and refused to allow their child to be institutionalized; instead choosing to raise their child in their own home. I have the utmost respect for those families because I can’t even imagine how difficult that must have been for them. They had none of the support and resources that we have today, yet their children grew up to live rewarding, meaningful, and fulfilling lives. My hats go off to those families.

All of that to say that because of the Americans with Disability Act, today is (supposedly) a different day in the United States for people living with disabilities.

The State Of Florida Apparently Didn’t Get the Memo.

The U.S. Justice Department launched an investigation and found that the State of Florida to have violated the Americans With Disabilities Act. I encourage you read the U.S. Assistant Attorney General’s letter I embedded above to get all the details, but if you don’t feel like reading through the letter, I took the time to do it for you.

Here are a few quotes from the Justice Department’s letter that I think sum it up quite well. (emphasis added.)

“Indeed, the State has planned, structured, and administered a system of care that has led to the unnecessary segregation and isolation of children, often for many years, in nursing facilities…As a result, many children continue to be separated from their families simply because the State has failed to identify or connect them to sufficient community-based services to meet their needs.”

“Our review of the State’s system reveals that the State fails to meet its obligations under Title II of the ADA…by unnecessarily institutionalizing hundreds of children with disabilities in nursing facilities. Many children entering nursing facilities in the State are unnecessarily separated from their families and communities for years. With adequate services and supports, these children could live at home with their families or in other more integrated community settings.”

“We conclude that the State fails to provide services to children who reside in nursing facilities in the most integrated setting appropriate to their needs…”

“Hundreds of children are currently segregated in nursing facilities throughout Florida. They are growing up apart from their families in hospital-life settings…they live segregated lives – having few opportunities to interact with children and young adults without disabilities or to experience many of the social, educational and recreational activities that are critical to child development.”

“We also spoke with many families who want to have their children living at homebut report their frustration with State policies that inhibit their ability to do so.”

“The State has also implemented policies and practices that impair access to medically necessary services and support that would enable children to transition home or to other community-based settings.”

“Many families members of children in the facilities we visited have expressed their desire to bring their children home, or see them move to a community-based setting. “I want my baby home,” said the mother of one three-year-old with Down syndrome…”

“The State’s reliance on nursing facilities to serve these children violates their civil rights and denies them the full opportunity to develop bonds with family and friends and partake in educational, social, and recreational activities in the community.”

To be honest, I can’t believe the things that I read in the Justice Department’s letter are actually happening in The United States in 2012! A father of son with special needsIt’s insulting, hurtful, and offensive. My heart breaks for the mommies, daddies, and children who can’t be together as a family because the State of Florida is violating Federal law.

I’m thankful that the Federal Government has gotten involved and has brought these injustices to light. My prayer is that the U.S. Justice Department follows through on this letter, and sees to it that the state of Florida responds swiftly to their requests to “remedy the deficiencies”outlined in their letter.

As a dad and a person who values life, I am angry, sad, and hurt. I’m thankful that there are people in our government like Mr. Perez who care enough about people to step in when they see something wrong. I’m also thankful to know that we have a God who cares about all people as well. To quote my friend Todd Wagner:

“People are God’s things, not play things, and God’s someone you don’t want to tick off.”

I’m also thankful that I don’t live in the State of Florida. 

What Do You Think?

What are your thoughts about what’s going on in Florida? Also if you have any personal experience with Florida’s mis-treatment of children with disabilities and their families, I’d love to hear your story. Please leve a comment below with your thoughts, and your stories.