Monday, September 17, 2012

Kids With Disabilities Being Housed In Nursing Homes


Hey, have you heard about what’s happening in Florida? 


What those brainiacs have decided to do is stick children with disabilities – some who are still infants – into institutions and nursing homes even though the level of care they need could be met in their own homes! I know it sounds outlandish – “Those types of things just don’t happen anymore!” – but it’s the God to honest truth! Instead of making the services these kids and their parents need available in such a way that would allow them to stay within their community, the highly paid, smarter-than-us-regular-folk, criminals-in-charge decided that they would rather use those funds to pay an institution like a NURSING HOME FOR THE ELDERLY to “care” for babies and children!

THE INVESTIGATION

A team of investigators  from the Justice Department visited six large nursing homes in the Sunshine State and found over 200 children with disabilities living in them. In many of these places, the kids are corralled into small, designated areas – these places are, after all, built to house the elderly, not children, so I’m guessing there aren’t too many areas in a nursing home that would be suitable or safe for a kid. And by the way, I use the term “house” spitefully; I do not think the majority of the habitants of these institutions need to be in places like these – repositories to contain the old, sick and frail that will bring a stream of money to the states they are located in. The average time these kids spent in a nursing home or other institutional setting was 3 years but they did come across some cases where the kids were there for over a decade.

These investigators spoke with many of these families and discovered that the parents WANTED their children home but couldn’t keep them there because Florida was not willing to make resources available to them, instead choosing to give those resources to the nursing homes. In some cases, these children are living hundreds of miles away from home which mean little, if any, contact with mommies, daddies, brothers, sister, aunts, uncles, etc.

Part of the purpose of the Americans with Disabilities Act (ADA) is to protect people with disabilities from being placed in environments they don’t deserve to be in just because it’s easier for the forces that be. It states that all patients and students must be placed in the least restrictive environment appropriate for that individual. U.S. Assistant Attorney General Thomas Perez has noted that Florida is NOT in compliance with the ADA. So the Florida Agency for Health Care Administration (AHCA) has got to be missing the mark because I sincerely doubt the Assistant AG would get involved unless there was some merit to the accusation brought forth by the investigation done by the Justice Department. There was also a Supreme Court decision in 1999 (Olmstead v L.C.) that prohibits forcing a person to be institutionalized in order to receive services they need when they can actually be getting those services in a less restrictive environment like, gee, I don’t know, their OWN HOME! 

WHY IS THIS HAPPENING?

As always, it’s all about the benjamins, baby. According to information dug up by the investigation “facilities often receive over $500 a day to care for kids, more than double the rate for elderly residents.”  An official from the AHCA, Elizabeth Dudek, was quoted as saying, “The agency will never interfere with a family’s choice for the location of their child’s care.” Hmmmm, the Justice Department doesn’t seem to agree, Ms. Dudek. In fact, it issued a Findings Letter just this month concluding that Florida is indeed violating the ADA and unlawfullyinstitutionalizing children! Here’s exactly what the letter states:

The United States issued a Findings Letter in September 2012 concluding that Florida is violating the ADA's integration mandate in its provision of services and supports to children with medically complex and medically fragile conditions. After a comprehensive investigation, the Department found that the State of Florida plans, structures, and administers a system of care that has led to the unnecessary institutionalization of children in nursing facilities and places children currently residing in the community at risk of unnecessary institutionalization. Florida has implemented policies and procedures that limit access to medically necessary services and supports that would enable children to transition home to community-based settings. The Department recommended that the State implement certain remedial measures, including the development of sufficient supports to enable children with disabilities unnecessarily segregated, or at risk of unnecessary segregation, in nursing facilities to receive services and supports in integrated settings in the community.

SAD VISIONS

I keep getting this mental picture of my daughter sitting in a home somewhere, alone because she can’t get up and go play with other kids and there’s not enough nurses or nurse’s aides around to give her some attention. She would have her beautiful long brown hair chopped off because it’s easier to wash and brush this way (yes, they DO do this), her wheelchair would not be fitted for her bony butt and her involuntary movements and she’d probably be all lopsided in it with worn out belts (I have seen some students in her school who live in group homes with chairs like these); they wouldn’t know that Entenmann’s chocolate chip muffins are her absolute favorite thing in the world and her teeth would probably be rotting out by now because it’s not easy to brush her teeth. But what gets to me the most is, she would be sad and lonely. Spending your days stuck in a chair pushed up against a wall somewhere is no way to live. Being two years old and confined to a room because the rest of the building is not safe is no way to live. Being a baby stuck in a crib with nobody to love you or hold you because there just isn’t enough time in the day is no way to live. And having a hospital as your “home” is definitely no way to live.

TOO BAD THERE’S NOTHING WE CAN DO TO CHANGE IT…OR IS THERE?

Florida needs to be woken up and made aware that they are being watched. It’s a sad fact that some people will only choose to do the right thing when they know they’re being watched but if that’s what it’s gonna take then I want to get as many eyeballs on them as possible!

Would you like to do something to let them know we’re watching that will only take 2 minutes out of your day? Go to http://ahca.myflorida.com/ On the left side of the page, you will see a picture of Elizabeth Dudek, Secretary, and right below her name is a link to email her. Send her an email stating that you read how her agency is institutionalizing children rather than placing them in their own homes. This not only violates the ADA and its least restrictive clause but it is morally and ethically wrong to force families to separate because the AHCA would rather pay a nursing home than provide in-home services. Tell her you are against this practice and want her to feel shameful for treating human beings this way. Cut & paste this if you wish; it will make the task even quicker for you!

Don’t wonder why somebody doesn't DO something to change something; 
BE THAT SOMEBODY!

1 comment:

  1. When I first read this report I was horrified, and, as your post brings it back to my attention, I feel a sense of unbridled rage.
    Children are placed in nursing facilities to die...young children who are not held and simply maintained in a ward will die. Unless a child requires the services of a PICU, they can be home and it is the responsibility of society to provide parents with the tools and support to care for their young at home.
    In Massachusetts, it costs the state about 250,000.00 to institutionalize a child. Even with skilled nursing care, it would be a fraction of that to keep the child home.
    Basically, disabled kids are a commodity. They are reduced to abstraction through the indifference of society. Worse than sin, this a cruel punishment...a death sentence. Every child, without exception, deserves family and no matter how "good" a nursing home is, it is not a family. Care is not connecting a g-tube or suctioning a trach; it is touch, love and caring.
    Florida ranks low in terms of services to children ...the more people that know, the better. Thanks for the reminder..that we all need to do something!

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