Saturday, August 11, 2012

TUNNEL VISION


First of all, let me apologize in advance for the length of this post. I can get pretty verbose at times, but this is important to the lives and futures of a lot of kids. I am speaking my own opinions. I do not speak for my employer on this site, although I am not alone in these views.

For just a minute, let's pretend. Let's pretend I have a daughter who is intellectually gifted. Mensa material kind of gifted. Sheldon Cooper from The Big Bang Theo.....well, maybe not THAT gifted, but close. My local school system doesn't have any accelerated programs that can address her advanced needs. I hear of a special boarding school that has lots of other kids that are as advanced as she is, lots of opportunities for her that it would be very difficult for me to provide, and staff who specialize in gifted kids. And, I don't have to pay! The price is covered through other sources of funding. Plus, I can go see her whenever I want and she can come home for visits.

Would I send her? I certainly would consider it a really, REALLY good option.

Would I want a government entity or education advocate telling me that the boarding school is a bad choice, that instead I have to pick between two other choices that they claim are far better:
  • I have to home school her instead. And, oh, don't worry, we'll send you another teacher to help, and she'll show up most of the time, but she might not specialize in advanced kids. And if she can't come, her replacement will be hard to find and, even then, might not know how to teach advanced kids either. But this is much better! Really!
  • I have to send her to a tiny school with only 3-4 other classmates instead. She won't get the same level of peer interaction, forget about all the extra opportunities, and the staff might not be such experts in advanced education. But this is much better! Really!
Now, if my child didn't have all these advanced educational needs, either one of those two options may work out just fine, but please don't tell me the option of the excellent boarding school with excellent teachers, lots of oversight, and lots of opportunities has been taken away from me. Don't I, as a parent, need choices?

I'm not really talking about education here. But this is the type of scenario playing out in the world of people with severe and profound disabilities.

To be able to visualize the type of disabilities I am talking about, let me give you a snapshot. The most common diagnosis is spastic, quadriplegic cerebral palsy with all that entails. With some exceptions to each of these that follow, a typical child is dependent on a wheelchair as she can't walk or even sit without total support. She can't speak, has minimal or poorly controlled voluntary movement, visual and/or hearing deficits, respiratory problems, orthopedic problems (such as scoliosis, dislocating hips, and contractures), significant spasticity, a feeding tube, seizure problems, and incontinence. She will require total care for the rest of her life, which will most likely be shortened due to all her medical issues. She is considered medically fragile.

First, let me say that the best place for anyone with disabilities is in a loving home that has access to all the resources necessary to provide for their loved one. But, even the strongest families can easily become overwhelmed. These resources include......
  • Financial - taking care of these kids can be very expensive. Medicaid waivers (which provide funding and resources for people with disabilities at home) are awfully hard to come by. The equipment is expensive. Usually, there is a family member who isn't working (or working part-time) to be able to stay home and be the caregiver.
  • Medical - you need doctors and a hospital that have experience with complex care kids. You need access to specialized procedures. You need reliable and knowledgeable nursing help in the home. And you need these things nearby. Also, providing total care 24/7 is physically exhausting and easily leads to health problems or injuries for the caregiver.
  • Community - you need a good transportation system if you don't have an accessible van of your own. You need fun things to do that are accessible to wheelchairs. You need help to navigate and decipher the maze of paperwork associated with Medicaid funding.
  • Educational - you need teachers that know how to teach children with disabilities, not merely act as a glorified babysitter.
  • Spiritual - you need support systems that can help alleviate the stress that easily overwhelms families providing that level of care. Friends, family, support groups, pastoral care - all become vital. There is tremendous strain on marriages. Siblings often feel overlooked as much of the focus is on the child with disabilities. The caregiver's own personal needs are often ignored.
Second, let me say that I have some friends who have their children with severe disabilities at home, and they are making it work. They show incredible love and dedication and their children are happy and well cared for. They are also fortunate enough to live in an area where most of those resources are available. Even so, I see and hear of the constant struggles they have and it leaves me in awe of how they manage to cope. I wish all our kids had families like that. That does not, in any way, imply that our kids have families that don't measure up. We have very loving and dedicated families as well. But, some are from rural areas where those needed resources are sadly in short supply. Some parents have health problems of their own that make it near impossible to care for their loved one. Some parents are single and can't do it all on their own. But, they still love their children to bits and want the best for them. I am in awe of the lengths they go to to remain an active part of their children's lives.

I readily acknowledge that facilities for people with disabilities have had a long and checkered history. There are truly horrific stories of institutions that warehoused people and shuttered them away with heartless neglect. But, it really hasn't been that way for decades. To paint them all with the same broad brush of disdain and disapproval is just plain wrong, and to say that every larger facility should close and force all their residents home or into foster care or group homes is short-sighted and narrow-minded.

For every horror story of a large facility, there are an equal number of horror stories of foster and group homes. I have examples, lots of them, that I would be happy to provide. Does that mean that all foster homes are bad? No. Does it mean that all group homes are bad? No. Does that mean that advocacy groups should make that decision for all families? No!

There currently is a lawsuit between Virginia and the Department of Justice regarding the five state-run facilities for people that are generally much higher functioning than our kids. The lawsuit is peppered with negative language. Words like "unnecessary institutionalization", "isolated", and "segregated". All words that conjure up images of people huddled in corners, rocking back and forth, rarely seeing the light of day. I take great issue with this terminology.

The size of the building is not the issue. It's what goes on inside and outside its walls that is important. Our kids get outstanding medical care and have so many opportunities to be active members of the community, not only through community-based activities that are part of the life of any growing child, but through numerous events at the Home where the community comes to them. We have resources. We have space. Go ahead - find a foster or group home that has the Virginia Opera coming to perform one of their children's operas for the residents. Find one that hosts motorcycle groups, petting zoos, big celebrations, the Fire Department, professional sports teams, scout troops, or contestants from the Miss Teenage Virginia pageant. Oh my gosh, the list is huge, both in and out of the Home. How exactly does all this "isolate" and "segregate" the kids?

There are some very loud and strident voices in Virginia that want to shut down larger facilities and move everyone back home, into group homes, support living, foster care, etc. Most people with disabilities are at a much higher level of functioning than our kids, and for them, these may very well be good options. Sadly, in far too many foster care or group homes, the residents are little more than a source of  income. But even considering the best of them, in the world of complex care, medically fragile people, those are not usually viable options, and here's why:
  • There are group homes springing up like weeds these days. Most are run by small (usually owned by a few people), private, for-profit companies, and most won't take our kids. Our kids cost a lot of money to take care of. They have to have nurses and expensive equipment. This would cut into their profits. "So sorry, we don't provide skilled nursing services."
  • Most foster situations aren't equipped to care for medically fragile kids. "So sorry, we're not trained in skilled nursing services."
See the problem? And that's just when they graduate from pediatrics to the world of adults. What about the kids who had to be removed from their families due to abuse or neglect? What about those families that don't have the ability to care for the kids at home because their area has no (or precious few) resources? What about those parents who, for whatever reason, just can't do it? What about those who have no alternative? Where do they go for help?

We're not looking to take anyone's child away from them. We're there to provide a safe and loving environment for those who have no alternative, for as long as they need us. We're there to give parents a choice if, for whatever reason, they feel unable to provide for their child needs. And, next to home, I feel we're the best choice.

I have another perspective on this. I have recently become the legal guardian of one of our graduates. He was brought to us when he was 3, and we never heard from his parents again. Phones were disconnected, mail was returned. You can't force someone to be a parent, especially when the disabilities are so overwhelming. I have known him since he was 4, and he was in the custody of social services most of his life, but when he turned 21, he had no one. He is now 24 and in a group home. It's a very nice group home. He gets out 3-4 times per month, but he doesn't have nearly the services and opportunities he had while he was with us. He has no therapist overseeing his wheelchair, splinting, and positioning needs. He doesn't have all his brothers and sisters around him for lots of peer interaction. He doesn't have nearly the opportunities for community interaction (both in and out of the Home), and his group home doesn't have near the level of oversight that we do. Is his life somehow better now that he is out of the big, bad "facility" and into the (somehow) idealized setting of a small group home? NO! Being in that group home has somehow integrated him into the community.....how???

I welcome, ask for, and encourage comments about this. If you have another perspective, please give me a rational argument. I especially would welcome opinions from those inspirational friends who are raising their special needs kids at home, those awesome moms who have kids with us, and any co-workers that love our amazing kids.

4 comments:

Lynnette Bolton said...

Thanks for sharing! Obviously, I am one of those folks who chooses to care for my daughter at home but not because I somehow think I am right or my choice is better; I do so because I can. I came to parenting a child with special needs through adoption, which is a different path than most. I made a choice and that is a luxury most parents don't get. Most parents find themselves thrown into the world of special needs with no training, knowledge, or experience. My years as a special educator provided me a distinct advantage. Because Brooke came to me through the gift of adoption, I had the unique opportunity to prepare, in a sense, for the crazy, unpredictable life that was ahead of me. I have raised my child at home for 14 years now so I represent that perspective, obviously, but I have also worked in a variety of facilities with both children and adults with varying degrees of disabilities for over 25 years. I have witnessed all that is good about facilities that are well run and provide a safe and nurturing environment for those who do not have an alternative and I have witnessed the horror of poorly run facilities where residents get only minimum care and are treated as no more than a body on a bed. I have worked with children in foster homes who were truly embraced by the family and nurtured in the most loving way possible and I have worked with students in foster care who were clearly no more than a source of income. Shutting down larger facilities and forcing medically fragile individuals into foster care, group homes, or back to family members who are ill prepared to provide for them will, in my opinion, only set people up for failed placements and increase the risk that they will be treated badly or inadequately. Well run facilities where individuals can get comprehensive care in a nurturing environment will always be necessary in my opinion. Perhaps the focus could/should be on providing families the training and resources they need to keep a loved one at home to begin with (and that's a whole other topic that is more than just the "waivers") and on improving the quality of ALL placement options (while recognizing the need for a whole continuum of care that is truly based on individual needs as those needs evolve over time).I could talk about this topic all night because there is just so much to discuss!
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Susanne Prince said...

My husband and I decided to put our son in St. Mary's when he was 3 years old. I felt so guilty at first, but it was the best decision we ever did. Before Brandon went to St. Mary's we had to fight for everything. We did not had the recourses and didn't know where to get them. St. Mary's changed all of that. I can not express the gratitude I have for all the people from St. Mary's. Brandon would not be the well adjusted happy young man he is today without the help of some very special people in St. Mary's.
A place like St. Mary's gives kids like Brandon opportunity to live a full life. There is no way we could do all the things here at home. When I see all the things Brandon does in a year ( all the places he goes to.....all the people that visit St. Mary's....School....after school activity s......outings with friends....Party's .......Family nights.....pajama partys where he scarries the girls...Camp...Rugby....I could go on and on) it makes me happy for him, because I could never do all of this for him and I know he is happy with his *other* family.
I wish I could express myself better.....but the most importend thing is that St. Mary's is a god-send for us and I am glad that I know that Brandon is in excellent care and he made a ton of friends.
He is going thru a very hard time right now and I know that everybody is in his corner.....and thanks Kathy for your support.

Kathy said...

Thank you, my friends, for your comments. You each have a perspective I could never have, and your words give us a personal story in connection to this issue. It is obviously an issue that bothers me greatly, especially since I haven't heard anything from the other side (other than idealism and generalities) that convinces me I'm wrong in my thinking.

Terry Lyle said...

Because I am in the field of education I will discuss this topic. By the time parents place their children in a facility, they are torn apart by the special education community. They are told that their child can not do this and can not do that, without any data to prove it! They are told their child just needs "functional skills", I don't know when "teachers" began thinking that reading and writing were not "functional skills". By the time I see parents, they are fighting for their kids to keep their therapies so they don't lose skills, fighting for GOOD teachers who actually teach, fighting for their child to be seen as a child who can learn...and they are tired of fighting! Every year that child has a teacher that sits around and does nothing is another year that child and family have lost!

I look at the children I work for and everyone is fighting...but for what is best for that kid. I watched this summer the ZOO, Starbucks, a journalist, a construction truck, firemen, and a baker come in and visit with our kids. I didn't have that every summer and I was raised at home.

I came to work here because I went to a school where across the hallway is where the "Kirkcone" kids were housed. Even as a child I knew it was wrong that those kids sat across from me in the hallway and were treated poorly by staff and peers. I often asked why they couldn't come to my class. So in 5th grade I became a buddy in the special olympics, I volunteered to help them get out of the building during fire drills and I even learned to finger spell in sign language so I could talk to one of the students. I sat with them at lunch and fed them, while I ate my lunch. I listened to them talk about how hard it was on their families, how medicaid wouldn't cover their broken chairs, how their wheelchairs stayed outside all night because their single mom couldn't get it through the door. That is why I came to work where I do, because I knew there was a place that could solve all of those things and make a child's life better. Thank you Kathy for reminding me of the passion we have for these kids!