The Glorious Winds of Change!

History was made in my home state of Virginia yesterday - history that will improve the lives of people with disabilities. Virginia has been ranked 47th out of 50 states in service to people with disabilities. The US Department of Justice believed change was needed and sued the state. A settlement agreement was reached and it marks the beginning a real, substantive change. A huge, huge thank you to all the advocates who made this all possible!



You can find the story all over the national press, but this from CNN sums it up very well:

Washington (CNN) -- In a closely watched case with implications for other states, Virginia reached a broad settlement with the Justice Department Thursday on protecting the legal rights of people with developmental disabilities, both physical and intellectual. The agreement also will resolve violations of the Americans with Disabilities Act.

Virginia agreed to provide an estimated 5,000 citizens with community services that will allow them to live in community-based settings, including family homes, rather than being institutionalized.

The Justice Department's Civil Rights Division is pressing states to comply with a Supreme Court ruling that says the developmentally disabled have a right to receive services in the most integrated settings appropriate to their needs.

Justice officials say the case is particularly relevant to ongoing investigations in Oregon, Florida and Utah. In addition, the Justice Department has issued its findings but not yet reached agreement with officials in New Hampshire, North Carolina and Mississippi.

The Justice Department has reached agreements previously with Georgia and Delaware.

Virginia has allocated $60 million to help integrate the individuals covered, and the federal government will match that with Medicaid waivers, according to Assistant Attorney General Thomas Perez, who announced the settlement.

Perez, an Obama administration appointee, praised Republican Gov. Bob McDonnell and other GOP leaders in Virginia for their cooperation in reaching the agreement. Perez says he is confident the agreement to minimize the institutionalization of individuals will save Virginia money in the long run.

The settlement follows a federal investigation of Virginia's system that found the commonwealth had ADA violations.

And this from Assistant US Attorney General Tomas Perez:

Virginia is a state with strong and committed advocates who have long been pushing for improvement of the Commonwealth’s developmental disabilities system. Throughout our investigation, we met with stakeholders across the Commonwealth, to learn about what is and is not working for people with developmental disabilities. We heard their problems and concer...ns, and ideas for addressing them, as well as their successes. We heard from families who are barely hanging on while their loved ones sit on long waitlists for community services and from self-advocates wanting more opportunities to work and live independently. We heard from the families of persons now living in institutional settings who worry whether the needs of their loved ones can be met in community settings. We also met with some individuals, including some with complex needs, who are being successfully served in the community. Our agreement draws on the input from these critical stakeholders about how to best meet the needs of all Virginians with developmental disabilities. Continued collaboration with and input from these stakeholders will be a critical part of the implementation of the agreement.

A Desecration of Life

Her sentence was handed down this week and it was a "lenient" 5 years in prison.

The judges at her trial felt sorry for her and believed she was "despairing of life."
A Chinese official connected to the case said what she did "caused only relatively small harm to society."

She was a mother who gave her twin 13 year old sons water laced with sleeping pills, and then she drowned them in a bathtub. After killing her sons, she dressed them in new pajamas.

The twin boys had been born prematurely and were diagnosed with cerebral palsy.

Even though Chinese courts usually deal harshly with murderers and sentence them to death or long prison terms, they felt sorry for this mother.

The mother had given up her job to care for the twins after finding it difficult to hire nannies. Her husband forgave her of the murders because after the death, they would no longer have to consider filing bankruptcy.

One of the judges is quoted as saying, "She deserved the lenient sentence. The murders resulted from years of mental burden."

The mother is quoted as saying, "I just wanted them to leave quietly."

But not to worry, this "caused only relatively small harm to society."

A VOPA Victory

If you were the family of James Roots IV you would surely want to know why he was allowed to die in the institution that promised to help him. You would want to understand why he was held in restraints for over 30 hours, even after he complained of being unable to breathe.

If you were the family of a patient at a so-called training center (read institution), you would surely want to know why he was allowed to swallow two latex exam gloves and subsequently die.

If you were the family of another person at that same training center, you would surely want to know why your family member’s ear was chewed off and where the staff were that were supposed to ensure such incidents never happened.

But the families of these three people were not told anything. They wanted details and the details were withheld. Then, with the assistance of the Virginia Office for Protection and Advocacy, legal proceedings were initiated demanding that the records be shared. The state agency in charge refused, and the circuit court in Virginia stood with the state agency.

But the wonderful staff at VOPA refused to let that deny the family members their information. The case went to the Supreme Court of the US and yesterday, that court ruled in favor of VOPA. Read the story of this historic decision here.

VOPA has been a Godsend to my family, and especially to my Ashley. I’ve written about them many times over the years, but here is one such post.

I applaud these champions of Virginians with disabilities. You continue to make a positive difference, and I am so very proud to count myself as one of your ardent supporters.

YES, YES, YES!!

From the Richmond Times Dispatch this past weekend:

"In a 20-page assessment of Virginia's care for the disabled released Friday, federal investigators detail hundreds of mentally and physically challenged people languishing in state facilities, subject to harm and neglect.

"Virtually no one who has been institutionalized long-term … ever leaves," one section of the report states, referring to residents at the sprawling Central Virginia Training Center in Lynchburg."

From CNBC, also this past weekend:

"Virginia violates federal law by needlessly institutionalizing people with intellectual disabilities and failing to provide adequate community-based treatment, the Department of Justice said in a report made public by Gov. Bob McDonnell on Friday."

Virginia has an extremely long waiting list for community services. Currently, 6,400 people are waiting, including nearly 3,000 identified as having urgent needs that could result in them being institutionalized.

Virginia's governor has 49 days to respond to the Justice Department or face a federal lawsuit.

This is huge - and about damn time.

Robert Latimer, Murderer

On October 24, 1993, Canadian farmer Robert Latimer decided it was time to kill his twelve-year old daughter. Tracy had cerebral palsy; she had undergone three successful surgeries to improve her quality of life. A fourth surgery was planned to ease pain from a dislocated hip. Despite the remarkable success of previous surgeries, her parents were horrified at the prospect of the fourth, and Robert Latimer decided to take matters into his own hands.

Robert Latimer planned his daughter's murder for close to two weeks. He considered administering a drug overdose, or shooting Tracy in the head, but he finally settled on gassing her to death. On a bright sunny Sunday his wife, Laura, and their other children went to church, leaving Tracy at home with Robert. He murdered her with exhaust fumes from his truck.

He took Tracy's limp body, reeking of exhaust fumes, back to the farmhouse and put it in her bed (as though sleeping) for Laura or one of their other children to find when they got home. Everything worked according to plan: Laura discovered the corpse after coming home and preparing lunch. She cried that something was wrong with Tracy and called to her husband to phone for help. Robert called the Royal Canadian Mounted Police (RCMP), telling them Tracy had died in her sleep.

Robert Latimer was convicted in 1994 for second degree murder of his daughter.

Canada's National Parole Board has released the details of two special conditions its members set in granting the 57-year-old's Latimer's release from prison last week - Latimer must not have responsibility for, or make decisions for, any individuals who have a significant disability, and he must continue to participate in one-to-one psychological counselling.

Has justice been served? Absolutely not...

Turning Wrong Into Right

This week has been an historic week for people with disabilities. Today, President Obama will sign into law the Twenty First Century Communications and Video Accessibility Act, and earlier this week, he signed the Rosa’s Law bill.

The Twenty First Century Communications and Video Accessibility Act will ensure that Web sites and makers of consumer electronics consider the vision- and hearing-impaired, who have been left behind as more communications tools move to the Web.

Here is a link to a Washington Post article that provides more details.

Also signed this week by the President was Rosa’s Law. Rosa's Law changes references in many Federal statutes that currently refer to "mental retardation" to refer, instead, to "intellectual disability".

Senator Barbara Mikulski said this when introducing the bill to the Senate with bipartisan support last November: “This bill is driven by a passion for social justice and a compassion for the human condition. We’ve done a lot to come out of the dark ages of institutionalization and exclusion when it comes to people with intellectual disabilities. I urge my colleagues to join me in a step further. Help sponsor the legislation that I offer on a bipartisan basis. Help me pass the law and know that each and every one of us makes a difference. When we work together, we can make change.”

I’m sure that not all Americans will agree with these two laws, and may even question their importance when war and famine and other horrible situations exist. But to people with disabilities and those that love them, this is wrong being made right.

A big thank you to everyone who worked to see these bills become law.

Doing Your Job

Last December, Jessica and I met with our state’s Department of Rehabilitative Services. That agency, DRS, is responsible for helping people with disabilities find employment. Of course, the person has to be found eligible first before DRS will assist.

Our first meeting didn’t go so well. The ‘counselor’ who scheduled our meeting seemed annoyed from the beginning of the meeting. I’m not sure why. Although the meeting was about Jessica, the counselor would only talk to Jessica through me. At one point, he claimed to have a difficult time understanding what she said. I told him that if he would look at her when she was talking, more than likely he would be able to understand her.

The counselor also gave us the impression that he didn’t feel Jessica was capable of being employed. He talked down to her (again through me) with statements like, “you know, you will have to get up to an alarm clock to get to your job on time.” And, “Do you think you can handle using public transportation?" These rude (in my opinion) questions were all posed before the gentleman even got to know Jessica.

The meeting ended when the counselor said he would contact Jessica’s school and our county’s agency that provides case management for people with intellectual disabilities. He told me he would let me know if Jessica was eligible for DRS’s help.

Like I said, that was in December. By March, I still had heard nothing. My calls to DRS went unanswered, and Jessica, now 19 years old, still had no plans for preparing for future employment. So, I contacted our state’s protection and advocacy organization. They agreed to represent Jessica and immediately began requesting records from DRS.

DRS said, “of course we found her eligible”, but of course, they hadn’t notified anyone. They were unable to produce records that showed she was eligible, and in fact could produce no records at all. So the attorney from the protection and advocacy agency and I met with DRS today – the original counselor and his supervisor.

The DRS folks were nice as could be today. They apologized. They made plans to do an employment situational assessment. They agreed to contact the school and the county case manager. In short, they agreed to do everything they should have done last December. I’m convinced that things changed because the attorney accompanied me to the meeting.

Why does it have to be this way? There have been way too many times that the only way I could get the attention of someone or some organization was to contact an attorney. The sole function of DRS is to help people with disabilities get jobs. Why did it take threatened legal action to make them do what they are tasked with doing?

Things really do not need to be this difficult.

Yet Another Abercrombie 'Look' Issue

This time, it involves a Muslim teen...

Abercrombie and Fitch at it again

Things That Caught My Eye This Week

I’m a Facebook user and have often wondered how accessible it was to someone who is blind. I have JAWS, the screen reader software, at work, but am not supposed to go on Facebook at work. So, I was pleased to find the following news story about Facebook’s commitment to making its site more accessible. Improvements will include:

• Audio CAPTCHA.


• Full HTML version of the site to make it easier for screen readers to decipher.


• Facebook Chat accessible by screen readers.


• Addition of a "no javascript" version of Facebook Gift Shop.


• Shortcut keys to major areas of the site.

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This week was the season opening for baseball. My sons have spent most of their Spring Break from school watching game after game on some TV subscription service they saved their money to buy. Yesterday, Mark Wetzel’s story appeared on the Sports Illustrated website. Mark is legally blind and is one of the most successful baseball hitting coaches in the world. After reading the article at Sports Illustrated, check out his personal website, The Blind Guy.

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Now from the land of ‘what the hell’, check out this story about Eddy Morten. Eddy Morten has Usher’s Syndrome, a condition causes him to be deaf and blind. Air Canada refused to let Mr. Morten travel on their plane alone. Mr. Morten is the father of two and is a Paralympic bronze medalist in Jude, and he can’t fly on a plane alone???? What is up with that?

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Hope Everyone has a safe and happy Easter, and finds lots of hidden eggs!!

Someone To Watch Over Me - Follow Up Part Two

Today I am continuing my followup to my post about guardianship issues for my 18 year old daughter, Jessica. My original post is here, and Part One of the follow up appears in yesterday's post.

Question 3 - What if I had concerns regarding Jessica's care in her group home? Would I be able to intervene with a guardianship? What if I knew her caregivers were trying to cover up something? Legally could I do anything to help Jessica?

Whether you are the guardian or not, anyone can file a report of suspected abuse or neglect. Your rights as a guardian are no different in that respect from anyone else. I don't see that guardianship helps in this situation at all. A person does not decide NOT to abuse someone because she has a guardian.

Question 4 - What are my other options? Would my child have to be legally competent to sign a medical directive? Could she also revoke it should the mood strike her?

For one thing, an advance directive is not an issue for a child because everyone under the age of 18 is considered to lack capacity. I think the competency level to agree to and sign one is fairly low. I have met with individuals who are basically non-verbal, but I had no doubt that they understood the concept and I had no problem drafting an advance directive for them.

As for revoking an advance directive, yes, the person can revoke it. That's one of the beauties of the concept because it is easy to write, easy to use and easy to change. You can do all those things without the involvement of attorney or courts.

This is an argument that is used quite often against advance directives, but I have rarely seen it play out in real life. The only time I've heard of it causing a problem is with a person with long term mental illness whose capacity yo-yos.

Question 5 - I've protected my child ever since I adopted her. Sometimes it seems like she needs the protection still, if not more.

I live in the real world and I want everyone to have the same opportunities and the same experiences as I do. I understand that some people need extra care and attention. I am not against guardianship in some cases, but if we can protect the person while still maintaining the civil rights, then why not?

The reality is that guardianship is always an option but maybe shouldn't be our first option. If you choose an alternative now, and decide later that your daughter needs guardianship, what have you lost? If you choose guardianship now, there is very little chance you can go back and change that decision because you would have to go back to court and prove that your daughter has regained capacity - very hard to prove when the individual has life-long cognitive disabilities.

I'm glad a lot of people have trouble with the idea of guardianship because it is a last resort and should be considered only in those situations where an alternative is not feasible, especially for a young person just starting their adult life. Even in a situation where it is needed, we should still pause because we are taking away that person's civil rights. When a guardian is appointed, the person loses the right to vote - to choose where they live and work - to get married or divorced - to have a driver's license - to make medical decisions including such personal decisions as sterilization, abortion, major surgery and do-not-resusitate orders - to enter contracts to rent, buy or lease property, and to write a will or advance directive.

Even if all those rights do not apply (even if none of these rights apply) to the individual, just the sheer loss of basic civil rights that these examples portray should give us pause when we consider petitioning for guardianship.

I hope you all have found this information as valuable as I have. And again, if you are considering any legal action involving your adult child with a disability, I urge you to contact an attorney or you state's protection and advocacy organization.

Someone To Watch Over Me - Follow Up Part One

Several weeks ago, I wrote a post about my daughter, Jessica, and questions about guardianship for her. As I mentioned in that post, both the school staff and the staff at our community service board were pushing me to go to court and ask for guardianship.

I was very confused about the whole process, and just the concept of declaring my daughter incompetent left me with a bad feeling. But, my brother had been through the guardianship process, and the school and community service board folks were so adamant that I felt I needed to investigate. That was what led me to a wonderful attorney who helped make everything clearer for me.

Jessica and I met with the attorney, and together we agreed as to the path we would take. I believe we are both comfortable with our choices, and I am anxious to get the process underway. Because I heard from other parents after writing my last post, my attorney has given me permission to share some of her comments with my readers.

It’s a lot of information, so I will break it up into two posts – one today and one tomorrow. I hope it will help other parents, but keep in mind that laws may vary from state to state, or country to country, and anyone with questions about guardianship should contact their own attorney.

Question 1 – Deciding to ask for guardianship means going to court and declaring that your loved one does not have the capacity to make decisions. Is the law black and white on that? Can a person have capacity for some things and not others?

The law is not black and white. Capacity is not an all-or-nothing concept, nor is it an on-off switch that can never be changed. Rather, capacity is fluid – it changes over time and circumstance. For some people it may change from day to day or may cycle as a disability waxes and wanes. When someone tells me that someone lacks capacity, my first question is, “Capacity for what?” because the level of capacity is different for different levels of decisions. For example, the level of capacity needed to make a decision about where I want to work or live is different than the level of capacity needed to make a decision about how to treat a brain tumor. Similarly, the level of capacity needed to sign an advance directive is lower than that needed to make the medical decision the agent may be called on to make.

Question 2 – If my child is of legal age and there is no guardianship in place, and if there was a car accident and my child was seriously injured, would the hospitals and doctors be able to provide information to me without my child’s consent? What would happen if my child were in a coma or was involved in some other way that left them unable to communicate?

Whether a person has a disability or not, there are laws that protect all of us in this situation. In Virginia, we have the Health Care Decisions Act that specifies who can make health care decisions for people when they are incapacitated for one reason or another. Why would a person in a coma be treated any differently if she had an intellectual disability before the coma? Everyone in a coma is just as unable to express their wishes and consent. We also have implied consent which covers situations where there is danger of death or permanent harm if treatment is not given immediately. If I am taken to the ER after a car accident and I am unconscious and in critical condition, the doctors can provide treatment without consent.

Furthermore, we all need to consider what would happen if we are ever in a situation where we cannot make or communicate our own decisions. We all, cognitively impaired or not, need to designate a surrogate decision maker now before that situation occurs.

Stay tuned for part 2 tomorrow!

Due Process - Part Four

My Due Process story continues... You can catch up by reading Part One here, Part Two here and Part Three here.

Besides my testimony, our portion of the due process case involved our expert’s report and two more witnesses. I couldn’t afford to bring the expert witness back for the actual hearing, but the hearing officer agreed to accept the report as testimony as long as the school’s attorney agreed. Since it would have looked really petty if the school’s attorney had objected (in my opinion), he did agree.

My next two witnesses were Ashley’s pediatrician, Dr. Gewanter, and her occupational therapist, Kari. Dr. Gewanter, himself a parent to a child with a disability, was also a very strong disability rights advocate. He was the first doctor who met Ashley when I adopted her, and he had followed her for many years. He knew what she was capable of, and he had watched her regress – the whole point of our due process case.

The school’s attorney did his best to discredit Dr. Gewanter, but he only ended up making himself look foolish (the school’s attorney, that is). Then it was time for Kari. Kari had been Ashley’s OT for many years, helping Ashley learn to eat by mouth and master activities of daily living. In addition, Kari had a background in working with people with vision impairments, a fact which led the hearing officer to designate her an expert witness also. But the most important feature of her testimony was the way her abiding belief in Ashley’s abilities and her profound disappointment when Ashley began to regress came through in her words. She was the most powerful witness we had. I think the school’s attorney realized the effect she had on the hearing officer, and wisely he decided to forgo cross examination.

Our case closed and the school began its parade of witnesses – but strangely, it wasn’t a parade. The school’s attorney seemed so sure of his case that he only brought two witnesses to the stand. The first was Ashley’s school principal, a very nice man, but someone who didn’t really have anything substantive to offer. The second was Ashley’s teacher, a woman would could speak as if she were an expert on the subject of deafblindness, but who under cross examination by my attorney would be shown to be lying.

But still the school’s attorney felt he had the win in the bag. It probably goes back to that statistic I shared early on about how school districts do win almost every due process case. This attorney had won everything to date, and he believed he would win this one also. He was so wrong….

It was time for closing arguments, and my attorney did a stellar job. The school’s attorney closed with a very short statement, again revealing his arrogance in my opinion. The hearing officer called the proceedings to a close, and everyone started to pack up to leave. We all shook hands, smiled, and played nicely one last time. The school’s attorney was the first to leave.

As I started to walk out with my attorney, the hearing officer shook my hand, looked directly into my eyes, and wished me the best for Ashley. It seemed a little strange at that time, but in retrospect, I think he was sharing a message with me.

The waiting for a decision began. My attorney told me that it often took 3-4 weeks for a decision. Ours was back in three days…..

The conclusion to this story will be next week - I PROMISE!

Someone To Watch Over Me

My daughter, Jessica, turned 18 years old this past December. Lots of people have been telling me that I need to go to court and have myself appointed her guardian. The school folks have told me that if Jessica decides she doesn't want to go to school anymore, she can make that decision for herself - unless of course I am appointed her guardian. The folks at our community service board tell me that Jessica would be able to make her own decisions regarding where she lives and what medical procedures she may want or not want - unless of course I am appointed her guardian. Friends and family tell me that I need to be appointed guardian for Jessica's sake. So, why do I feel so uncomfortable with the idea?

Jessica is significantly intellectually disabled. Her IQ is 52. She has aggressive outbursts and has injured both herself and others. She is living in a group home, and probably will be for the rest of her life. I'm hopeful she will be able to have a job, but our efforts to support that have so far not been successful.

So, it does seem like Jessica needs a guardian - someone to help her with decision making and to ensure she is not exploited or taken advantage of. Several weeks ago, I contacted the attorney that has helped me with both a due process case and a lawsuit againt Medicaid. I wasn't asking for his assistance with the guardianship because he works for our state's protection and advocacy organization and these kinds of cases are not ones they handle. Rather, I just wondered if he could recommend an attorney.

In his usual passionate,helpful manner however, he did ask one of the other attorneys in his office to contact me. I now have a meeting scheduled for the attorney, Jessica and me to discuss options. The most exciting thing about all this - the attorney told me that there are options other than guardianship. I have no idea what they are, but just the knowledge that there might be other options made me feel a little more comfortable.

Have any of you had to address issues like this? What did you ultimately do, and what were your feelings while going through the process? I'm having a tough time, and am not doing a good job explaining why. Maybe your comments will help me...

Due Process - Part 2

I started my story of due process last week, and this week I will continue. It's surprising to me how relating the story is getting me on edge again. The issue is resolved, but I'm finding the reliving of the process rather difficult...

Filing For Due Process

Deciding to file due process against my school district was not an easy decision to make. I knew that an attorney was likely to cost me a second mortgage on my house. I had heard about the bully school attorney, and how he had reduced other mothers to tears in front of the hearing officer. I read the statistics about how school districts prevail in due process 98% of the time. And I knew that trying to fight another, really big, battle along with being a single parent to four children (and three of those with disabilities), a full-time computer engineer and maintaining my various commitments to boards and advisory councils was going to be tough. But I didn’t realize just how tough.

I contacted my state’s protection and advocacy organization – called the Virginia Office for Protection and Advocacy (VOPA). They reviewed the issues and decided to take the case at no charge. And while I knew the school district attorney was a bully, I have never met a stronger, more committed, more intelligent attorney that my VOPA attorney.

Jonathan, the VOPA attorney, filed the necessary paperwork to initiate due process and told me to be strong. A hearing officer was assigned, and the attorneys and the hearing officer began to talk. Mediation was suggested as a first step. I had very little hope that mediation would result in anything meaningful because I felt like all the steps leading to due process had been mediation. But, I went through the motions.

The mediation meeting was held the school district central offices (home team advantage, perhaps they were thinking). The director of special education, a very disingenuous woman with whom I had spoken too many times to count, was there along with two other ‘specialists’. The meeting was facilitated by the mediator, an older woman supposedly trained to keep blood from flowing between the parties.

I talked – they talked – we got nowhere. Since attorneys cannot attend a mediation meeting, every so often I would excuse myself and go to another room to discuss with my attorney the progress (?) we were making. I tried to play nicely – I tried to find a common ground – I really did. But the school district representatives refused to budge and kept checking their watches as if they had more important things to do. After three hours, the mediator declared the game over.

The next three or four weeks leading up to the actual hearing were spent collecting and organizing documentation, consulting with the ‘expert’ we hired for our evaluation, and practicing the actual cross examination. My attorney knew the school district attorney was going to go after me with a vengeance, so he went after me with a vengeance first, toughening me up for the hearing. I also spent some time googling the hearing officer’s name. That may sound like a strange thing to do, but there was a method to my madness.

I wanted to know what type of person the hearing officer was. I wanted to know if he had definite views on certain subjects – subjects I should either avoid or mention. I wanted to know how many due process cases he had presided over and how he had decided. I wanted to get inside his head to see if I could then get him inside mine at the hearing.

I found out one interesting fact with my googling. Mr. Hearing Officer was a regular contributor to the adoption agency that had placed Ashley in my home. Knowing that, I bet that it would be a good thing to share with Mr. Hearing Officer that I had adopted both Ashley and my oldest daughter through that agency. Would it help at all? I had no idea, but I figured it wouldn’t hurt.

The week before the hearing, I don’t think I got more than a couple of hours sleep each night. I kept practicing over and over in my mind how I would respond to the school district attorney, and how I would maintain self-control and not let him get to me. I’m not a drinking woman, but that week I rethought that stance….

I didn’t realize this story was going to be so long. I thought I could tell it in three installments, but that doesn’t seem to be working. This has gone too long already, so part three will be next week….

Resources and Examples of Right

My friend, Jane, shared a link to a special education law blog that seems to be full of good information. I haven’t had a chance to go deeply into it yet, but I think it’s time that we had more good resources on special ed law. Peter Wright’s site is good, but competition is good also.

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Along those same lines, I also found another special ed law resource a few months back. It is linked on the left side of my blog, and it also seems to be an excellent resource for parents.

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As many of you know, I have written several times about my search for a church home. In the last week, one of my fellow writers at the 5 Minutes For Special Needs site also wrote on that subject, and the comments left on her blog were quite eye-opening. Seems my negative experiences have also been felt by many others. But my brother alerted me to a church that has indeed gotten it right. Check out this article about a perfect example of people loving people. I especially love the title of the article, Spontaneous Compassion.

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Finally, I ran across this article about a little girl who was finally able to tell her mother that she loved her. Make sure you have some tissues close by when you read it…

No Child Left Behind? Really?

There have been 19 days of school so far this new school year. And for all 19 of those days Ashley has not had the support called for by her IEP.

Ashley’s IEP calls for the services of an instructional assistant who is ‘sufficiently proficient in sign and speech so as to provide a language role model.’ The IEP states she should be receiving those services for 6.75 hours each school day. The school day is exactly 6.75 hours long.

Since providing such services has always been a point of contention in past school years, I checked with Ashley’s school staff prior to the start of this current school year. I was told, of course, that they had not been able to find anyone to fill the position, and that the classroom assistant in Ashley’s class would fill in until someone was hired. The classroom assistant is ‘sufficiently proficient’, and I am more than pleased when she works with Ashley. So, what’s the problem?

The problem is the classroom assistant is entitled to a lunch break every day. So, for 30 minutes each day, Ashley is without communication support. The classroom assistant is also entitled to sick leave. So, for one full day this month, Ashley was without communication support. And, the classroom assistant must attend weekly physical therapy sessions outside the school building for an injury she sustained last year in the classroom. So, for two hours each week (in addition to the lunch break and the sick day), Ashley is without communication support. None of this is the fault of the classroom assistant. She is doing everything she possibly can to assist Ashley, but the school district has rules that must be followed (lunch breaks, sick time, etc).

Ashley is profoundly deaf in her right ear, and has a severe loss in her left ear. She is totally blind in her left eye, and has a clinical measurement in her right eye of 20/2000. She communicates with sign language and prefers that whoever signs to her does so directly in front of her ‘good’ eye. She doesn’t use a communication board because she has chosen not to. She doesn’t speak because she has never been able to hear well enough to learn to speak. Sign language is her preferred and only means of communication. None of this is news to my school district. Ashley is currently in the eighth grade and has been receiving services from this same school district since she was two years old.

At the start of the second week of school, after attempting to resolve the issue with my school district and getting nowhere, I filed a complaint with my state Department of Education. At that point, a very long timeline goes into effect due to all the administrative aspects of the complaint investigation and resolution. Monday, September 29th, the school district is required to file a response to my complaint – unless of course they don’t and then they are given another 7 business days. The actual investigation by the Department of Education may then take up to 50 more days – for a total of 60 days – unless ‘exceptional circumstances’ exist and then they get more time. If the school district is found to not be in compliance, they have 30 business days to file a corrective action plan, unless they don’t file. Then the Superintendent for the Department of Education is notified and gets involved. Then….who knows. That’s where the documentation stops.

So, do you think this will get resolved this school year? Here’s a hint – I’m getting more than a little perturbed and I have my attorney’s phone number on speed dial.

Commitment Unequaled

It’s been two years since the original request for services – services I strongly believed Ashley had a right to have. As expected, however, that request was quickly denied. That’s what you, your team and I expected, and so we marshaled our forces and set out to slay the evil dragon.

The road has been crooked with many potholes along the way, but I still believe we are getting closer. Ashley’s progress has been stilled, but if you and I can win this battle, she and a lot of other children will benefit in the long run. I believe a little quiet now will be worth the celebration in the future.

The latest ‘decision’ was not completely bad. Again, we are inching closer to victory, and I don’t want you to feel like you have failed Ashley. We’re going to get there – Ashley is going to get what she needs – and as always, you will be the conduit for that success.

So, thank you again, Jonathan. Thank you for believing in Ashley, and thank you for fighting her causes for the last eleven years.

Latimer on Day Parole

Last December, I wrote about Tracy Latimer, a 12 year old girl with cerebral palsy. Tracy's father, Robert Latimer was convicted in her death. Mr. Latimer appealed a recent decision by the parole board allowing him no parole. That appeal has resulted in Mr. Latimer being allowed day parole. He has served 7 years - 7 years for murdering his daughter. Here is a link to the story about his parole appeal and the decision:

Latimer Parole Decision

And, oh yea, as part of the parole decision, he cannot have responsiblity for anyone who is severely disabled. I feel much better about all this now (she said, sarcastically).

Deputies Dump Paralyzed Man From Wheelchair

I first saw the following information posted by Penny Richards at the Disability Studies, Temple University blog. It was also featured on the Today Show this morning.

Brian Sterner, a quad, was stopped on a traffic violation on January 29th and taken to the station for booking. Deputy Charlotte Marshall Jones didn't believe he was really paralyzed, so she dumped his wheelchair forwards, and he (surprise!) fell to the ground. The incident was caught on the office surveillance camera (video below, but be warned--it's distressing to see), and she has been suspended without pay. Brian Sterner, it turns out, is the director of the Florida Spinal Cord Injury Resource Center, based in Tampa. He plays wheelchair rugby with the Tampa Generals, and he's working on a PhD.



Here's the news story as reported by the Associated Press

Tracy Latimer - A Life Cut Short

Tracy Latimer was a 12 year old girl with cerebral palsy. She went to school, seemed to enjoy it based on comments from her teachers, and most people considered her to be a happy child. She was known to laugh a lot, and she had many friends.

But her father saw things differently. Robert Latimer decided one day to take Tracy for a ride in his truck and then leave her with the car running and a cloth stuffed into the tailpipe. Tracy died.

Robert Latimer tried claiming it was a mercy killing - a compassionate homicide. He claimed that his daughter suffered greatly, and that he did not want her to suffer anymore. No one else ever said that saw that suffering though.

Robert Latimer was arrested and tried for and convicted of second degree murder. After a lengthy legal appeal, all the way to the Canadian Supreme Court, Mr. Latimer received a sentence of life in prison with no parole for at least 10 years.

Mr. Latimer has served 7 years and last week, tried to get parole - day leave so he could go to work. The parole board refused to grant his request – thankfully. The 3 board members at William Head Institution, a minimum security facility on Vancouver Island said they were left with the feeling Robert “Latimer has not developed sufficient insight and understanding of his actions.” The board recommended that Mr. Latimer participate in some counseling and he won’t have another chance to apply for day parole for two years.

Parole Board's Latimer Ruling

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Yesterday, Brooke and her mother came to my house for a Holiday party. Like Tracy, Brooke has cerebral palsy. She is also deafblind, tube fed, and has a trach. The one thing Brooke has that Tracy did not is a parent who loves her and respects her.

Brooke’s life, though different than some children her age, is full and rich. Like Tracy, Brooke is happy and laughs a lot – big belly laughs that make everyone around her laugh also. She has friends, goes to school, and has a crush on the host of Blues Clues. She is a vibrant and engaging little girl who has made this world a brighter place. Tracy, unfortunately did not have that chance.

If only the parole board could add years to a person’s sentence, not just reduce a sentence….