Thursday, April 21, 2011

"Bureaucratically Impaired"

Breaking Point
digitally modified from a photo of unknown attribution

It was once said that the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life-the sick, the needy and the handicapped.
-- Senator Hubert H. Humphrey, remarks at the dedication of the Hubert H. Humphrey Building, November 1, 1977.-Congressional Record, November 4, 1977, vol. 123, p. 37287.

Back on March 30, I almost resumed blogging. I awoke to something that made me really mad. It was an article in the Miami Herald stating that our shiny new Governor, Rick Scott, was planning to make up some budget deficits by invoking his emergency powers and cutting funding to the Agency for Persons with Disability by anywhere from 15 to 40%. As many readers of the blog know, I'm the permanent legal guardian of one of my former GAL youth, whom I'll call Marina. Marina will be turning 22 in June. She is severely autistic, mentally retarded and virtually nonverbal. She is completely dependent upon her caregivers for just about every aspect of her life you can think of. To say I have strong feelings about the 15% cut passed onto her Group Home providers at the beginning of April would have been the understatement of the year, possibly of the decade. In the race to see if his influence could be even more corrosive and damaging to the welfare of those most vulnerable, Rick Scott surged ahead, at least in my mind, of Paul Ryan, with his cavalier plan to save our state some money by reducing care of the most vulnerable, least vocal, non-voting (cynical much?) sector of Florida's population.

To say that there was wholesale panic in the service sector that provides for disabled children, youth and adults would be no exaggeration. There was a lot of negative press about it, too. Take for example the case of Behavioral Services of Brevard County, which closed for several days because they simply how no idea how they could cope with the 15% cut, which came after all the other cuts that happened under Charlie Crist's and Jeb Bush's administrations. APD Support Coordinators, APD Group Homeowners, parents and families of the disabled rallied and protested statewide. After two weeks of vehement protests on the part of those worried about this most vulnerable sector of Florida society, Scott has, possibly, succumbed. He announced on April 14 that he was rescinding his order.  I'd call it averting disaster, but hey, that's just me. And I'm not sure that I really believe he won't still find some back-door way to screw over the disabled in my state.

In the interest of trying to clarify just what Florida taxpayers hard-earned money is going for, I thought I would tell you more about Marina. She is not an exceptional case. In fact, I would have to say that she's probably a little too typical, sadly.

Marina came into the foster care system at age 14. Her parents, who are themselves cognitively and physically disabled, could no longer manage her care. She was removed by the Florida Department of Children and Families and her parents tearfully signed surrenders admitting that they could not provide for her needs. I came into Marina's life when she was 18 because her public school was making repeated calls to the Florida Abuse Hotline about their observations of neglect of care. My GAL supervisor requested first that I become Marina's Surrogate Parent in Miami-Dade County Public Schools, because Marina already had a GAL assigned to her case. But the GAL wasn't a MDCPS certified Surrogate Parent. A Surrogate Parent follows the educational interests of a child or youth who is dependent (a ward of the state) and who has no family member or foster parent that can or will fulfill the role of signing documents like the student's Individual Education Plan, requests for psychoeducational evaluations, and in general asking questions about whether the child's needs and educational best interests are being met. A good Surrogate Parent can make a huge difference in a child's education. They can keep the child from being expelled or inappropriately suspended by requesting Functional Assessment of Behavior evaluations, demanding Behavioral Intervention Plans, questioning implementation of those plans, and a variety of other things. Your arsenal, if you're a thorough SP, is knowledge of the Individuals with Disabilities Education Act of 2004Section 504 of the Rehabilitation Act of 1973, and familiarity with a slew of different evaluation instruments like IQ tests and achievement or functional assessments and which are appropriately used to accurately determine a child's disability if one exists. The majority of children who enter the foster care system, especially in situations where the children are raised in foster care, have significant educational delays or learning disabilities. Whether they suffer from emotional/behavioral disabilities because of their social history, or whether they have significant learning impairments because of abuse and neglect on the part of a parent, I can think of only a handful of cases I've had as a GAL where the children did not have something going on that would require them to be in a special education setting. Even the one gifted child I've been the GAL for since 2005 had to repeat 3rd grade because he couldn't pass the reading portion of the FCAT. Though he was, after fighting with MDCPS like a Tiger Mother on my part, determined to be mathematically gifted. Anyway, Surrogate Parent = very important for child in foster care. Bad things happen to children in foster care when they have no educational oversight and foster care case managers cannot fulfill this function because it is a conflict of interest in my state.

When I entered Marina's life in 2007 I was puzzled by all the stuff that was flying around like a maelstrom around her. Her foster care management agency claimed they didn't know what was going on or what to do. She was residing in a behavioral-focused Agency for Persons With Disabilities Group Home that claimed she was a "very difficult consumer." (Consumer is what they call their residents in these homes- they are consumers of their services.) When I went to her school to meet with her Special Education Specialist, I felt like the maelstrom stopped. This quite polished and elegant woman sat me down in her dingy office on the cushionless, well-worn chair and had my rapt attention for over an hour as she took time to tell me of her, and of Marina's teacher's, concerns about the young woman. She was being sent to school on days she menstruated with no feminine products, often already soiled with menstrual blood, and in clothes that appeared to have been bought used and many sizes too large. She was aggressive, biting people or herself until she bled, wailing, grunting, crying, agitated, dirty, smelly, and in general, miserable. This woman and Marina's teacher had reported this to the Florida Abuse Hotline multiple times. The young woman I saw in the classroom was slumped over and almost non-responsive on her desk. Today, I was told, she had hardly been awake at all and now they thought she was being over-medicated. The teachers, several teachers, who came to talk to me told me that they had known her for years and knew her parents, who had surrendered her to the state and that the young woman had deteriorated in state custody terribly. I was, to say the least, shocked. First I was shocked that all these people in what was supposed to be this "F" rated school were taking all this time and trouble to talk to me when they were so busy and understaffed. But the stories they told me- of having to take her to shower her off because she was so filthy, of their getting school uniforms or food for her with their own money, left me utterly speechless. They suggested that I check out the Group Home she was living in and one of them broke confidentiality to tell me that two other young ladies who had been in the same home at their school had been removed from it by family members who said they found the conditions there unacceptable. I reported the whole thing to my supervisor and then met with the assigned GAL who was extremely reticent about doing an unannounced visit at Marina's Group Home. So... I went with her.

Entering this Group Home was sad thing. Marina was indeed the only "consumer" still living there, although the owner had several other homes that were not empty. It was passibly clean but dark, minimally furnished and Marina was in bed, on a Saturday afternoon, wearing the same clothes I'd seen her in the afternoon before at school. She smelled bad, wouldn't get up and rocked when we entered and tried to talk to her. Her well-intended GAL had had only baby or younger children cases before and had no idea of what to expect from a APD Home, or a severely developmentally disabled youth. But even she saw that this was not what to either expect or accept. The Group Home owner, who I later reported in part for the conditions in the home and in larger part for many other things, was short staffed and said the staff she had was frustrated. Marina wasn't being medicated consistently and clearly some of the staff that tended her just simply didn't care about her hygiene or much of anything else. But clearly the Group Homeowner didn't care, either. I took over the case as GAL in late 2007 and one of the first things I did was recommend we get Marina out of this home and into a better one. Her Case Manager concurred and said he thought he'd agree with any home that I could recommend. I interviewed several prospective providers with the assistance of a very helpful team at APD and settled on a home that was run by a woman who had worked at an aggregate care facility (that's wraparound residential, medical, dental, occupational, vocational and rehabilitations services for the disabled) in Miami, called the Community of Landmark. After closure of that facility in 2005 she had opened a series of group homes in Miami with staff drawn from the women and men she had worked with for decades. They offered a bright and airy home, a vast amount of experience, full staff, behavioral analyst services that appeared to be quite detailed, and recreational therapy that might help her lose weight or at least be fitter, since I was concerned about a family history of fairly serious diabetes and high blood pressure. They seemed confident they could help her have a better life, were willing to facilitate visits by her parents, who still cared about her and were so worried about her. At that point I was mostly just confident she would be safer and cleaner. 

This is the beginning of where the Florida taxpayer needs to really pay attention, okay? 

Marina moved over the Christmas holidays. She had to be taken to the emergency room within a day or two. Baker Acted because of a meltdown, because change is so hard for autistics? Oh no. No, not at all. The Group Homeowner called me and said she and her staff decided there was something wrong, that she was ill, that she was probably in pain. A staff member noted her urine was dark and didn't smell right. Always given to stress biting of her own wrist, Marina was having a field day on that wrist. But that was her only sign of adjustment issues to the new home: that she was biting herself. Where was the expected affect? She seemed really... flat. No, the GHowner told me resolutely, there was something about her affect that was just off. They didn't know her all that well, but they were pretty sure she wasn't comfortable. So the Group Homeowner insisted on taking her to the ER, even though she didn't have all the placement documentation for her yet. Good thing, too, because Marina, it turned out, had a fairly nasty urinary tract infection. What's reality of things when you're functioning with the intellectual capacity of a toddler? Do you learn to toilet on your own? Hmmm. Maybe not. But nor may you be happy lying or sitting in your own urine for long periods of time and getting cold and smelly. Because you can produce a lot of urine when you're 5' 6" tall. So maybe sometimes, you exhibit a little more control and hold it. But... wait a minute... if you're nonverbal, how do you tell someone you need to go? Hmmm. YOU DON'T. Then there was the whole business of the fact that she was doing a lot of... well, how graphic does my grown-up audience want me to be? See, just because you've got the intellectual capacity of a 2 year old doesn't mean that you don't have the hormonal drive of an 18 year old. Mother Nature, wow, she's got goals. So masturbation, including public masturbation and self-stimulatory behaviors of all sorts are really common in the disabled population that Marina exemplifies. And so is rectal digging. And really, when you put those three things together, it's not at all hard to see how you might get a urinary tract infection, is it?

Toileting habits is where we begin, people. Bathroom schedules. Staff that pays attention and makes notes. Staff that has experience reading non-verbal cues that indicate that a person may be in discomfort. Maybe you can't pay someone to care but you sure can pay someone to care for you. A myriad of changes ensued in Marina's life. Her hair, which had been a dirty, too tight-braided mess on top of a raw and irritated scalp, was washed and over the course of several days, so that she didn't end up in stimulatory overload and start biting herself or others, slapping herself or banging her head, was carefully re-braided. Clothes were bought with her social security funds, toenails were trimmed, fingernails clipped short so she couldn't scratch herself and, gasp!, painted a pink shade that seemed to make her smile. She went back to school in early January in new clothes, with a uniform shirt and with a sheet of contact numbers for Group Home staff members and changes of underwear and feminine sanitary products in her backpack. A more comfortable harness, required for her bus ride to school, was purchased. The staff slowly began to get to know Marina and inquired about her dental care (hadn't been to a dentist since 2006 and her teeth were thick with tartar) and whether maybe we could ask the dentist (since she'd have to be under sedation anyway for the exam and cleaning and any fillings) if he could round off her eye-teeth so she couldn't gouge quite so deeply into her wrist when she was agitated and biting. A wristband, just like those worn by tennis players, appeared on her wrist to cover the area and extras were sent in her backpack to school. She was moved to a bedroom with a big window, because she likes sunshine and looking out, whereas another young lady new in the home appeared to be agitated by windows and things going on outside. Anyway, a few weeks later, this is what was on the cover of the report I presented to my beloved Judge:

That was in early 2008. I eventually became Marina's permanent legal guardian, after promising her parents that she would be taken good care of, even after she was out of the Dependency Court's extended jurisdiction at age 19. Yesterday, Wednesday, I participated in what is called a QSI interview with someone from the APD at Marina's Group Home. The QSI, or Questionnaire for Situational Information, is where they capture what they call information about "your life and need for service and support." That's code for saying it's where they try to figure out if you need all this stuff they're paying your Group Home provider for providing to you. If you don't participate, you can be cut off from funding or at a minimum your funding can be sharply reduced. During the course of the interview it was first determined that Marina could not be interviewed herself (that nonverbal thing is such a drag....) and then that she:

  • Needs scheduled trips to the bathroom and hygiene assistance in the bathroom.
  • Needs assistance bathing herself safely.
  • Needs assistance dressing and prompting to remained appropriately dressed in public.
  • Needs assistance selecting and cooking food for her meals because is not able to do so safely herself.
  • Needs assistance feeding herself, both in the form of provision of smaller meals, especially at school, where she is likely to eat too quickly (choking risk) or too slowly (frustration when asked to transition and has not finished meal) and to not steal food that looks attractive from peers thereby putting herself at risk of harm from those peers. Also must have all food prepared in small bite-sized portions as she cannot use utensils other than a spoon.
  • Needs regular recreational activity to prevent further weight gain and to keep blood sugar in normal range and blood pressure low.
  • Needs redirection from self-injurious behaviors that include biting self, pica of her own stool, rectal digging, masturbation with objects, and hitting herself.
  • Needs constant supervision in any public location to prevent wandering.
  • Needs assistance managing her medications for aggressive behavior and anxiety.
  • Needs assistance for going to doctor for medication and overall health management.
  • Needs assistance for dental care because she must be fully sedated and needs watchful recovery time afterwards to prevent falling etc.
  • Needs careful monitoring because she appears to be unable to communicate in any clearly identifiable fashion when she is in pain or has any other needs, whatsoever.
  • Needs full-scale removal assistance in the event of a disaster.

Not surprisingly all of the above was deemed highest tier, around-the-clock care. I feel so lucky to have identified someone who can meet Marina's needs and so worried to think that maybe they may not be able to continue. Because the many good people who work in her home work hard for the six women living there. Paying people to provide that level of care does not come cheaply. 

Just look at that before and after photo again. Every day of her life 'before' led to what you see in that before picture. She communicated the only way she knew how about her misery- she hurt herself, she hurt others. She was Baker Acted a number of times because of her uncontrollable aggression, which I'm going to go out on a limb and call her justifiable outrage.

If Rick Scott had gotten his cuts, how many APD Group Homes would end up being like that first home that Marina was living in? 

I'm betting quite a few would.

❧ ❧ ❧

So Florida Taxpayer, here's your assignment. I want you to try to imagine that Marina doesn't have anyone to make sure she takes her bathroom breaks and how much her hospitalization for the ascending UTI that becomes a kidney infection might cost? Or what if she bites herself because she has pain from a UTI and gets a worse infection from that bite, like MRSA, that requires expensive care? Or what if she bites or otherwise injures a staff worker in an understaffed Group Home who then goes on disability leave because they can't work. What if she eats too fast and chokes and she deteriorates to an even lower level of functioning? Or what if someone takes their eyes off her and she simply wanders away when they are on an outing?

Yesterday, the APD worker conducting the QSI shared with me his story of a wandering disabled adult, the 38 year old son of a personal friend in the Tampa area. Someone took the man with them to pick up their child at a daycare. They left the man waiting in the car while they went inside to pick up the child. They came out, he was gone. The police searched to no avail. Everyone hoped he'd turn up. Two days later his body was found in a nearby lake. Apparently he had been attracted by the sparkling sunshine on the water. He did not know how to swim. I guess he wasn't getting the assistance he needed.

Dean Cannon, Florida's Speaker of the House, the man who thinks that uterus is an ugly word, is going to resume his drive on trying to limit reproductive choice in my state next week, evidently. I ask, for about the millionth time on this blog, why if life still in the womb is so damn sacred, life that is already here, in the form of dependent children, the disabled, the genuinely mentally ill or homeless is somehow counted as less sacred than a mere clump of cells in a uterus?

The disabled in my state have no voice other than that of those who try to provide care for them or who are willing to stand up and advocate for them. The truly decent people of this state, the ones with the real family values, for their fellow human family, are those like the teachers in Marina's school, spending time they don't have to safeguard her, or those at the Behavioral Services of Brevard, who were willing to take salary cuts of as much as 25% just to try to keep serving their clients who would otherwise be literally service-less. It's not about conservatives demanding that people take responsibility to pay for their own healthcare or disability needs nor is it about maintaining or creating tax cuts for Florida residents. But it is, most assuredly, about taking responsibility. And being willing to lead. Being willing to say that government does have a moral imperative to safeguard society's vulnerable members.

Decent and moral people of any reasonable financial wherewithal do not deny the disabled their duly needed care, Governor Scott. I hope that you've seen the light for real on the topic. But I, like so many others, am not holding my breath.

I just want to clarify here, since I'm a lover of thrift shops, in particular for kids, who outgrow things quickly, that Ms. XXXXX's version of "used" meant, badly used, as in worn, not clean and clearly not appropriate.

© Bright Nepenthe, 2011

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