The Roving Activist’s Blog

From ABC World News 

March 2, 2007 - Americans with disabilities are far more likely to be unemployed or underemployed than Americans without disabilities.

The law says employers are supposed to make accommodations to help disabled workers manage in the workplace. But despite legal protections, disabled workers have higher unemployment rates and lower incomes than workers who are not disabled.

Are you skilled, educated and able to work but unable to get hired? Do you think you have you been discriminated against on the job as a result of your disability?

ABC News wants to hear from you. Tell us your story, and let us know if you are willing to be contacted by an ABC News producer. Be sure to include information regarding how we can reach you by phone during the day.

http://abcnews.go.com/WNT/story?id=2919141&page=1

The link still works, so go tell your story while you can!

Temporary Reprieve for Emilio Gonzales

Terminally ill baby gets reprieve from Friday deadline to unhook respirator

National groups, including Schiavo’s siblings, involved in case

By Mary Ann Roser
American-Statesman Staff
Wednesday, March 21, 2007

A terminally ill baby at Children’s Hospital of Austin will have at least 18 more days before he is taken off life support after lawyers for the hospital and the boy’s mother agreed Tuesday to give his mother more time to seek another hospital to care for him.

The agreement to leave 16-month-old Emilio Gonzales on a respirator until 5 p.m. April 10, rather than turning off the machine on Friday, came after his mother sued the hospital Tuesday and after lawmakers appealed to the hospital to change its decision.

“Thank you, Lord Jesus. . . . I am so happy that I have more time,” Emilio’s mother, Catarina Gonzales, 23, of Lockhart, said as she burst into tears at the news Tuesday evening.

Emilio has become a cause cilhbre of organizations in Texas and across the country that say the law usurps the rights of loved ones to make life-and-death decisions. Gonzales’ growing group of supporters includes state lawmakers, right-to-life and disability rights organizations, and even the brother and sister of Terri Schiavo, who died in Florida after a bitter court fight two years ago.

Gonzales now faces the daunting task of finding another facility that will agree to care for Emilio. Gonzales and Children’s Hospital said they have been searching for another facility for many weeks, to no avail. Without the respirator, Emilio would die within hours, said lawyer Jerri Ward, who is representing Gonzales.

Doctors at Children’s Hospital say that ongoing treatment for Emilio is potentially painful and futile because he has no hope of recovery. They diagnosed Emilio with Leigh’s Disease, a rare neurometabolic disorder that causes the central nervous system to
collapse and motor skills to degenerate.

Gonzales said she wants her son to receive treatment until he dies,without doctors deciding his fate. “Put yourself in my position,” she said Tuesday at a news conference at the Capitol. “How would you feel if I was a doctor and I said, ‘Your son only has 10 days to live and if you can’t find a facility, we’re going to take him off a respirator . . . Friday,” she said.

Ward asked the hospital late Tuesday for more time, and the agreement was reached between Ward and Michael Regier, general counsel for the Seton Family of Hospitals, said Seton spokeswoman Michele Gonzalez.

However, under Texas law, the ultimate decision on whether to withdraw care rests with Emilio’s doctors, who could not be reached for comment Tuesday. If the doctors decide to withdraw care, the law gives families 10 days to find another facility. Asked whether Emilio’s doctors agreed with Tuesday’s decision, Gonzalez said:”We will work with the physicians and staff to make sure the treatment continues.”

Emilio’s care is being paid for by Medicare and Medicaid, and the cost probably has reached hundreds of thousands of dollars, said a Seton attorney.

The extension means the lawsuit against the hospital will not proceed, Ward said.

At the Capitol news conference, members of organizations such as Texas Right to Life threw their support behind a bill that would eliminate the 10-day rule and require doctors to treat terminally ill patients until another facility can be found to accept them.

Emilio “is the latest victim of this law,” said state Rep. Bryan Hughes, R-Mineola, who is co-authoring the bill to change the law. Hughes’ bill has more than 60 co-sponsors in the House.

Regier, the hospital’s lawyer, said in some cases there simply isn’t another facility that will accept a terminal patient.

Bob Kafka of Austin, national organizer for the disability rights group Not Dead Yet, later shared letters that organizations, including the National Spinal Cord Injury Association, have written to Gov. Rick Perry urging him to “spare the life” of Emilio, who has been in the pediatric intensive care unit since Dec. 28.

“It seems like the medical community is trying to institutionalize, or worse, kill people with disabilities, ” Kafka said.

Schiavo’s siblings, Suzanne Vitadamo and Bobby Schindler, are aiding in the national search for a hospital that will take Emilio, said Elizabeth Graham, director of Texas Right to Life. Schiavo’s case became national news after her husband petitioned a court to remove the feeding tube that had helped keep her alive for 15 years. Schiavo’s parents fought back, arguing that their brain-damaged daughter was conscious and not in a persistent vegetative state, as doctors said. Schiavo died in March 2005 at age 41 after a court ordered the feeding tube removed.

Gonzales said her son is aware and fighting to live, despite doctors’ contentions that he is comatose.

RA’s Note: I am glad that Baby Emilio has been given a reprieve, but the key word here is temporary. We must remain diligent and fight for a permanent reprieve until Emilio’s mother is able to find a hospital that will take him. Emilio and others with severe disabilities must have the right to live out their lives without a doctor overriding the decisions of family members and loved ones. I still contend that if Emilio and his mother were wealthy, we would not be having this fight.

The new Commissioner of the Division of Human Rights Commissioner
Kumiki Gibson will be here Wednesday, March 28th at 9:30 AM. She’ll stay for about an hour. She wants to meet and hear from people. The Commissioner has a specific interest in disability issues and discrimination against people with disabilities. She’s doing a swing
through upstate and wants to visit CDR/RCIL to learn more about people with disabilities, the barriers we face, and what Independent Living Centers do.

We’ll give a tour to the Commissioner and talk about various needs of people with disabilities and what services we provide – and barriers and advocacy to remove barriers. Then we’ll have a big meeting with her in the conference room… that’s where the `lots of people’ come into play.

Staff and consumers and volunteers are very much welcome and encouraged to be present. We’ll coordinate in advance some people to make sure specific points are driven home to the Commissioner.

Among other items in the Commissioner’s biography: “During the Clinton Administration, she served as legal counsel to Vice President Al Gore from 1994 to 1997″. She is now running the state organization charged with enforcing human and civil rights laws within New York State.

Action Alert

March 21, 2007

Federal Legislation to Eliminate “In the Home” Restriction on Certain Power Mobility Devices (PMDs):

MEDICARE INDEPENDENT LIVING ACT

Soon To Be Introduced in Congress

ISSUE:

Congressmen Langevin (D-RI) and Ramstad (R-MN) are preparing to introduce legislation to eliminate Medicare’s “in the home” restriction on mobility devices and your help is needed to secure original cosponsors!

Congressmen Langevin and Ramstad will soon introduce the “Medicare Independent Living Act” to eliminate this discriminatory restriction for individuals with long-term mobility needs. The Congressmen have circulated a letter to their House colleagues requesting original cosponsors of the legislation (prior to its introduction) .

ACTION:

The National Council on Independent Living (NCIL) and the ITEM Coalition request the following action:

Please call your Representative toll-free via the Capitol switchboard at 1-877-224-0041 and ask that he/she become an original cosponsor of the Medicare Independent Living Act. 

BACKGROUND:

The Medicare Independent Living Act is bipartisan legislation to eliminate Medicare’s “in the home” restriction on mobility devices and will be introduced by Congressmen Langevin and Ramstad in the coming weeks.

Medicare’s “in the home” rule is outdated and restricts coverage of mobility devices to only those needed for certain in-home activities.  An individual who requires a mobility device to help them prepare their meals or brush their teeth may receive a device. However, an individual who may be able to move around their home without a mobility device, but requires a device to go to work, school, the grocery store, or anywhere in the community, is not eligible. This restriction unfairly confines many individuals with disabilities to the four walls for their homes and sharply contradicts community-based initiatives such as the Olmstead Supreme Court decision, Ticket-to-Work Program, New Freedom Initiative, and Americans with Disabilities Act.

Unfortunately, the long-standing “in the home” policy is still in place, which is a discriminatory and harmful restriction that denies individuals with mobility impairments access to the devices necessary to meet their functional needs both inside and outside their homes.  In addition, there will still be economic issues with access, given that the reimbursement rates for certain types of PMDs are reduced from the levels under which they had previously operated. Many providers already indicate that they will not be able to continue supplying such devices to Medicare beneficiaries.

If you have any questions, or would like a list of the original sponsors contact Elizabeth Leef at NCIL at Elizabeth@ncil.org or the ITEM Coalition at (202) 349-4260.

Thank you for your advocacy efforts!

Baby Emilio will die on Friday

Here is some more information and numbers to call to plead for the life of little Emilio Gonzales. I beg anyone reading this to call the numbers below, and also write the Governor to issue a stay of execution for Emili. It is heartbreaking to know that the people and organizations that one would normally expect to be supportive of Emilio are siding with the state of Texas and the doctors! Would it be different if Emilio was from a wealthy family, and not a poor child on Medicaid, the son of a single mother? If Emilio was rich, would he be on death row at the tender age of 16 months?

Melanie Childlers, one of Andrea Clark’s sisters, wrote the following disturbing message concerning Emilio Gonzales, the 16-month-old boy who is set to be taken off “life support” against his mother’s wishes:

Emilio Gonzales is a sixteen month old infant at Brackenridge Children’s Hospital in Austin, TX. He has been diagnosed with Leigh’s disease. Leigh’s disease is a genetic malady which is caused by a lack of functional mitochondrial complexes. There is NO DEFINITIVE TEST for Leigh’s disease, and physicians usually diagnose it based on symptoms, alone. There are tests which can back up the diagnosis, but let me reiterate: there are no definitive tests for this disease.

A group that practices in-house at Brackenridge Children’s Hospital, in Austin, TX, called The Pediatric Physicians Alliance of Central Texas, has decided that Emilio Gonzales should die. Although not all of the test results are in, and even if they were, they would not be a definitive diagnosis of Leigh’s disease, Emilio Gonzales is set to have his respirator removed this Friday.

This disease is usually treated with thiamin, but these physicians decided to take him off of treatment. It was only when his lawyer, Jerri Ward, insisted that they put him back on the treatment that they did so. These children can live, and often do live, to be about six or seven years of age. This child is sixteen months old and these physicians have decided not to give him a chance at the rest of his life, despite his family’s wishes to the contrary.

We have been in touch with the Bishop of the Austin Diocese–Bishop Aymond–who you would THINK would stick up for the life of this little child, but who instead supports killing little Emilio Gonzales. I guess if you’re on Medicaid, your life just isn’t as worthwhile as it would be if you had good insurance. Bishop Aymond’s number is: 512-476-4888. Please call him and if you can’t get him on the phone, leave a message, letting him know how you feel about the Catholic Church’s approval of the murder of this small child. Keep in mind: This is a CATHOLIC-owned hospital! The head of the Catholic Conference of Bishops is Andrew Rivas. His phone number is: 512-339-9882; please call him and let him know how you feel about this issue.

Please, also get in touch with Brackenridge Children’s Hospital, in Austin, TX. Their number is: 512-324-8000. Let them know how you feel about their murdering Emilio Gonzales. Maybe if they get enough calls through their switchboard, they might change their mind about killing this little boy.

You may also contact the physician’s group (Pediatric Physicians Alliance of Central Texas) that is handling Emilio’s treatment, composed of several doctors who have actively campaigned to have this child’s treatment withdrawn at: 512-324-8009.

Please post these numbers on any blog or website you can think of and help this mother stop the hospital from killing her little boy!

Update: here is a letter written by Diane Coleman, President of Not Dead Yet:

NOT DEAD YET Letter Opposing the Texas Futility Law

Dear Governor Perry,

I am writing on behalf of Not Dead Yet, a national disability organization that fights legalization of assisted suicide, euthanasia and other types of medical killing. The Texas chapter of Not Dead Yet has been part of the effort to overturn the current draconian “futility” statute in your state - an effort that has been effectively stonewalled by the special interests of medical facilities, medical professionals and bioethicists’ .

Unfortunately, the latest implementation of this statute can’t wait for a change in the law. Emilio Gonzales, who is 16 months old, will die next week when the Children’s Hospital of Austin removes him from a ventilator.

According to news reports, Emilio’s use of a ventilator lacks “dignity” and merely “prolongs death,” according to the ethics committee at Children’s Hospital.

As president of this national group, I can tell you that the nation has been watching Texas for some time with increasing alarm.

On behalf of our allies in Texas and their concerned allies around the country, I request you order a “stay of execution” for this young child.

If you need reasons other than simple humanity, here’s one that might help: Since Emilio is a Medicaid recipient, he falls under the protections afforded by Section 504 of the Rehabilitation Act of 1973. Removal of his ventilator - against the express wishes of his mother - violates his civil rights under Section 504. In addition, the due process right to a hearing arises when Medicaid benefits and services are reduced for an individual. If the recipient’s parent has even been duly notified of this right, no such hearing has taken place. Any theory that the ethics committee procedure satisfies Medicaid hearing requirements is ludicrous.

But right now, what’s most important is a child whose brief life will be snuffed out shortly - and with not even one of the protections that would be afforded death row prisoners.

Please intervene. Now.

Sincerely,

Diane Coleman, J.D.
President Not Dead Yet

What follows is absolutely scary and unbearably sad.

URGENT ACTION ALERT: Urge TX Gov. to Stop 10-day Death Countdown

Dear Readers,

The following action alert comes to us from Bob Kafka of ADAPT/Not Dead Yet of Texas. A news article with background information on the child, Emilio Gonzales, and his mother, Catarina Gonzales follows underneath the action alert.

Child to be Killed in Texas

Activists:

There is a 16 month old child in a Children’s Hospital in Austin, Texas that has an extremely severe disability.

The mother of this child wants the doctors and the hospital to continue treatment. The doctors say it is “futile” and have started the 10 day clock, that which at the end of these ten days unless the mother has found another doctor or facility to treat her son, the doctors in Austin will discontinue care and he will die. They say care is “futile”, the mother says give her more time!!!

Though the medical specifics are complicated and the legal issues byzantine, the disability rights issues are not.

Simply stated the hospital and the doctors are going against the stated wishes of the legally responsible person, the mother, who has stated her opposition to their “godlike” position.

The disability rights movement was founded on the fundamental concepts of “choice and control.” Our medial diagnosis shouldn’t allow the medical community to override our wishes or the wishes of our legally authorized representative.

A person on death row in Texas gets more protections than the child in Austin is allowed by Texas’ “futile care” law. The hospital ethics committee has met and the ten day death clock is ticking.

Ten days and you’re dead!

We must speak out. There is a bill in the 80th Legislature that would change our current “futile care” law to “treatment pending transfer”.

The doctors and hospitals are against it.

This disability community represented by the Texas Disability Policy Consortium has a position supporting “treatment pending transfer”.

However while these political wranglings go on, it is likely the child in the Austin hospital will be dead, caused by the arrogance of the medical professions not to listen to the wishes of his mother.

Why are doctors in Texas allowed to overide our decisions?

PLEASE ACT TODAY!!! TIME IS CRUCIAL.

The Ten day death clock is ticking!

Please contact Texas Governor Perry’s office and ask him to give the child in the Austin hospital a reprieve. He can give reprieves to death row inmates. He can save the life of the child in Austin.

The person to contact in Governor Perry’s office is Nora Cox:

ncox@governor.state.tx.us

Thank you,

Bob Kafka
NOT DEAD YET of Texas
www.statesman.com/news/content/news/stories/local/03/13/13emilio.html

Doctors Say They Plan To Cut Off Baby’s Respirator

Mother has 10 days to find another hospital for son, but odds don’t seem good.

By Mary Ann Roser
American-Statesman Staff
Tuesday, March 13, 2007

Saying that continuing treatment would be hopeless and possibly painful, doctors at Children’s Hospital of Austin notified a young mother Monday that they will withdraw a respirator from her critically ill baby in 10 days unless another hospital can be found to take him.

An extensive search has been unsuccessful, and the odds of a transfer are poor, said Michael Regier, general counsel for the Seton Family of Hospitals.

The mother, Catarina Gonzales of Lockhart, vowed to “do everything that’s possible,” including seeking an out-of-state hospital for 16-month-old Emilio.

“It’s really hard because you see your son moving, and you see him opening his eyes,” Gonzales, 23, said after receiving the five-page report from Seton’s ethics committee about ending treatment. “He’s fighting. . . . If I have to take him out of state, I will.”

Her attorney, Jerri Ward, said she would be surprised if a hospital in Texas agreed to take Emilio.

Doctors say Emilio has Leigh’s disease, which causes the central nervous system and muscles to degenerate. They say that Emilio’s brain is shrinking and that there’s no hope of recovery.

Gonzales and doctors at Children’s Hospital have fought bitterly over the boy’s treatment. Gonzales says he is responding to her, and doctors say he is comatose and near death.

State law allows doctors to say that treatment is “medically futile” when they believe that it prolongs dying.

An ethics committee reviewed Emilio’s treatment Feb. 19, and doctors agreed to continue treating him in case a transfer facility could be found or he could be made strong enough to return home, Regier said.

But Emilio got worse, and doctors could not resolve treatment issues with his mother. A second ethics panel Friday said treatment should stop.

“The current aggressive treatment plan for Emilio amounts to a nearly constant assault on Emilio’s fundamental human dignity, and with little, if any, corresponding benefit to Emilio,” it wrote.

If no transfer is found in 10 days, Emilio’s respirator will be stopped, and he could die within minutes or hours. He would get comfort care so he does not feel pain, Regier said.

Gonzales, a single mother, said that because of childbirth complications, Emilio is the only child she will ever bear.

Here is the letter that I wrote yesterday, when I read this:

Dear Ms. Cox,

My name is Anita Cameron, and I am a Systems Advocate from Rochester, NY. I am writing to ask you to convey to Governor Perry my sincerest hope that he will intervene to save the life of little Emilio Gonzales, age 16 months. Emilio has a condition called Leigh’s disease, and now has less than 1 week to live. After that, he will be removed from the respirator because his doctor says that treatment for his condition is futile.

Please issue a “stay of execution” for Emilio so that his mother will have the opportunity to transfer his care to another doctor. I cannot believe that a doctor, whose first concern is to SAVE a life, should be so intent of ending one. This appears to me to be a form of euthanasia. What will this lead to in the end? Will parents of children with severe disabilities have to live in fear for their children’s lives if they get sick?

Little Emilio is worthy of life, and should be given every chance to live. No child should be put on “death row” because of the “crime” of being born with a severe disability.

Please save Emilio!

Sincerely,

Anita Cameron

Rochester, NY

The following article is a critique of sorts about the media coverage of the story of Ashley.

After Ashley: Covering Children with Severe Disabilities
By Leann Frola
Naughton Fellow

The beginning of 2007 brought a new face to our TVs, computers and print media: Ashley. The 9-year-old who will never grow up.

Ashley is developmentally and physically disabled. She has static encephalopathy [PDF], a condition that is the result of severe brain damage that will not improve. At her parents’ request, doctors removed her uterus and breast tissue and gave her hormones to keep her small. Her parents say she will be easier to care for that way.

As coverage continued, the debate grew fiercer and the sides more polarized with this basic question: Was it right to stunt her growth?

But now the flurry of coverage has slowed. So I wondered — how can journalists use what’s been said to broaden the discussion about children with disabilities like Ashley’s? What follow-ups could be written? How do we dig deeper than Ashley?

To find some answers, I turned to Arthur Caplan, Ph.D. He is the director of the Center for Bioethics at the University of Pennsylvania and a member of Poynter’s national advisory board.

In the following Q&A, Caplan shares what he thinks journalists have been missing and where to go from here.

How do we go beyond what’s already been covered about Ashley?

I think Ashley’s an interesting case. The policy questions are some of the things we need to be focused on, not just the odd or freakish nature of, “Is it right to keep somebody small?”  Is what’s right for this family right for other families? What’s the context? Is this a trend or just the weird, odd story of the week?

Families often can’t get any home-care aid, but they wouldn’t send their kid to a horrible institution. So a journalist could just ask around locally, what’s going on?

What might be causing the lack of home-care help for those with severely disabled kids? Is it a lack of money, lack of resources, lack of knowledge about how to access resources, or what? What needs to be done so that these families do get more assistance?

And what happens to kids like Ashley if their parents abandon them or when the parents are too old to be able to care for them?

Journalism is attracted to wonderful stories and human interest, and that’s what the Ashley story has. But it shouldn’t be just that. Your second-day story should be these policy stories. Otherwise, there’s a risk of turning the Ashley case into a kind of voyeurism.

What else hasn’t been covered?

This is a good example where there’s all kinds of voices that haven’t been heard from yet.

There are various disability groups that have positions on what was done to Ashley. Most of them don’t like it — independent- living groups, disability organizations … I haven’t seen many voices from the disabled community on this case.

RA’s Note: This really bugs me because this isn’t the first time that I have heard this — that the disability community hasn’t raised its collective voice. I know that ADAPT has issued a public statement about Ashley’s “treatment”. I also know that my Center sent out an Action Alert to speak out against the “Ashley Treatment”.  ADAPT chapters and allies in Chicago and Washington, DC have staged protests. There is an online petetion put up by members of our community urging people to sign in solidarity for the dignity of people with disabilities, speaking out aganist what has been done to Ashley. There has been lots of movement and speaking out against this in our community, so I don’t understand why people continue to spread the myth of the silence of the disability community. Perhaps the reason that we aren’t being heard is that our voices are being silenced by those that support the horror that has been visited upon this precious little girl. Perhaps the media is choosing not to hear our outrage. I mean, I don’t know what else we can do to show the public that we are totally against this. Somebody give me some ideas. Anyway, back to the article…

All kinds of professional societies — not the same as the patient-advocacy groups — they’re people who are going to make a living studying something as opposed to having that condition. I didn’t see much from them. What does the AMA (American Medical Association) think or NAMI (National Alliance on Mental Illness) about all this?

Then there are different caregiver groups, some of which deal with severely disabled children or elderly patients — people who’ve had strokes or aneurysms. It’d be interesting to hear what they have to say.

Another issue that did not get much attention: What’s the simplest way to keep somebody small?

Just don’t feed them as much. Caloric restriction is a way a lot of people have dealt with the problem Ashley’s facing. Then there’s a fine line between keeping people well nourished and starving them.

I haven’t seen one word about caloric restriction, which means journalists haven’t been digging that deep.

So that tells me that when people run into these kinds of stories, they tend to be completely dominated by the people who are blogging and by the charms or failings of the particular family. But there’s not a lot of context given in that kind of coverage: Have other families dealt with this? What do disabled people think about this? What do doctors and experts think about this? What is the cheapest place to care for an Ashley? What if the parents abuse her if she is at home — will anyone know? So it’s been a very narrow slice on the Ashley case.

There’s also some other things that’ve been said. The parents want to keep her home. Keep her home from what? An institution? What I’m getting at there is, are institutions for kids like Ashley horrible? Wonderful? Fine? Cesspools? Snake pits? You know, what are they? Do they vary from state to state?

It’s a hard question to ask, but it’s one a good, enterprising journalist would ask: Is it better to keep her at home? And what are the institutional options that are out there? What’s out there for taking care of severely disabled kids like Ashley?

What’s at cost? Do we want someone like Ashley to stay home because it’ll cost the rest of us a whole lot of money? Is it cheaper if her parents are willing to take this on? What’s the financial side of all that anyway? I haven’t seen anybody raise one word about money.

Conversely, or related to this, when the parents of kids like Ashley [die], who takes care of them then? Does it matter if they’re smaller? In other words, there’s another issue out here. Are these kids going to be just kept small while their parents are there? But what happens to them when their parents are gone? What happens to them?

The parents, one of the things they said, they didn’t want her to have breasts. How often are people who are in institutions attacked? If it is the case, that might be worth a little investigative story — is it right to worry about it? Is it really the case that patients are assaulted by their caregivers? Do they screen people for sexual crimes?

So future coverage ideas:

a.. Look into the status of home care and institutional care for the severely disabled.
a.. Look into the financial burdens families face who try to care for a child at home.
a.. Look at the impact of having a severely disabled child on marriages and on siblings.

What do you think of the coverage so far? What’s been done well? What needs work?

I think the core debate over her has been well-covered — the pros and cons. We got both sides of the ethics of the procedure. I think people have a good idea of why the parents did what they did. I think their story has been told pretty well. I don’t think it’s entirely clear what was done to her — with hormones and things. It’s not that journalists didn’t try, it’s just you really gotta stay with that one.

I think the coverage was also pretty good of the thoughtfulness of the parents. Journalists acknowledged it was hard for them to present and were sympathetic to that idea that it’s tough to tell your personal story of life with a disabled kid. But they might have ignored that question of what’s the best place for a severely disabled kid to be. That’s the tougher question to ask.

How do you cover the complexities of a story like this one while still making the information understandable?

I don’t think that’s so hard here. I think people get it. Here you’re asking about institutional care — what do other people who are disabled think about it. I don’t think this is a technical thing.

How does running photos and videos of Ashley and her family affect the story and readers’ reactions to it?

It generates enormous sympathy. It’s skewing the case that way. Anytime you’ve got picture access of the little girl, people are going to identify with that little girl — more sympathy for the idea of keeping Ashley small. She looks cute, she’s appealing.

I think you have to [compensate] for that in the text — making those who hate what was done to her heard. That’s the balance that wasn’t made. Not people who are caregivers — real people with disabilities. Most of them don’t agree with what they did to Ashley, just looking at e-mails from my columns.

I got a fair number of people who don’t like what’s going on with her, and they tended to be disabled. People who supported the family tended to be parents. It was strongly divided that way.

Ashley’s parents blog about their daughter’s condition and their decision to keep her small. How influential were blogs in disseminating information about Ashley? How did audience interaction affect the story?

They certainly made a difference on the story. There’s a huge amount of blogging going on. But more than other stories, I don’t know. They have a very big impact to drawing attention to the story, and seeing people debate it. It got a lot of people to vent their opinions … and a lot of positive impact. Just people talking back and forth on what they thought.

I think most people got their facts out of the news, then they just used the blogs to vent an opinion. I don’t think they learned about it from blogs.

How can journalists avoid exploiting or giving the appearance of exploiting someone like Ashley — a developmentally and physically disabled child?

She’s completely incompetent. You really can’t get away from some element of exploitation. That’s just going to be a part of that story. A 9-year-old, severely disabled girl who can’t give permission … there’s no other way to get around it. You start talking about getting more pictures, more balance, but no, I think you’re just stuck. You’re going to take advantage of her, and that’s just how it is. And I don’t think people were put off by it. I think people were pretty tasteful and respectful about writing about it.

What advice do you have for journalists covering a story like Ashley’s who have a strong opinion about it?

Drop the strong opinion. This is a very complicated issue, and you cannot bring any ethical or ideological baggage to it.

You’ve written a column for MSNBC.com about Ashley, saying that you do not agree with her parents’ decision to prevent her from growing. To what extent would you encourage other journalists who might not have your bioethical background to also write opinion pieces?

I would encourage them. Once they learn about the story, they can surely make sound arguments pro or con, and this is a subject that is so new that it can greatly benefit from debate.

Where can journalists covering Ashley and related stories turn for resources?

Lots of places, but a good start are children’s hospitals, state departments of disability, parent groups at public schools, and clergy who may have counseled families with severely disabled kids.

Sector 4 Community Development Corporation to present at CDR/RCIL

Come one, come all, and join us on April 11, 2007, at 2:00 pm in Room 122 at the offices of the Center for Disability Rights, and the Regional Center for Independent Living! John Borek, President of Sector 4 Community Development Corporation will make a presentation called Brooks Landing: The Beginning. The presentation will focus on development efforts in certain areas of the Southwest District of Rochester. After the presentation, Mr. Borek will be available for questions. Part of the presentation will include a disability perspective, so it is very important that folks with disabilities plan to attend this presentation.

Some of you may remember that this presentation was originally held on January 29, 2007, in the parish hall of St. Monica Church. Unfortunately, that venue was inaccessible to people with mobility impairments, or those who use wheelchairs. A letter was written to Mr. Borek expressing outrage that a public meeting was allowed to take place in such a venue. Mr. Borek expressed strong apologies, and pledged that it would never happen again. When asked if he would meet with staff and members of CDR and RCIL, he graciously agreed, and offered to re-present the Brook’s Landing presentation. Of course, we agreed!

While it is very important that residents of the Southwest District, particularly those with disabilities, attend this event, it is not limited to them. Several new businesses will open in that area, and many of their potential customers will not be from that area, so if you live in another district in Rochester, or are from the surrounding areas, please come by, and bring a friend! A sign language interpreter will be provided.

If you have any questions, please contact Anita Cameron at 442-6470 ext. 164.The office is located at 497 State Street in Rochester.

Light refreshments will be served.

The week started out kind of yukky, but ended rather nicely. Monday, I was sick with a bug that kept me in a certain part of the house all day. Needless to say, I did not go to work, though I did make the attempt. I called Chris to let him know what was going on, and he told me to take a sick day, and stay at home. Arlene called me later to see how I was doing. I thought that was rather sweet of her to think of me.

On Tuesday, I felt somewhat better, so though I was still a bit weak and feverish, I decided to go to work. I took my time, though, and made it in at 11:00. While checking my e-mail, I saw a message from my friend, Gwen. She was actually on her way up with the rest of my stuff! Of course, I was happy. I’d been living a rather Spartan existance, and looked forward to having my things, so that my place would be less like a bare loft, and more like home. Arlene offered to help unpack when Gwen came. I graciously, and gratefully accepted!

Wednesday was Pi Day. You know, Pi — the circumference of a circle — 3.14 something something something all the way to infinity? Sorry folks, though my head is filled with facts and factoids of every description, it does not include the value of Pi greater than the first two numbers beyond the decimal point. I leave that to the true numbers enthusiasts.

Anyway, Gwen called on the stroke of eight to say that she was 30 miles outside of Rochester, and would call again when she got to my place. I left a message for Chris on his cell phone, telling him what was going on. He had left for Albany on Monday, and would be there all week.

At nine, Gwen came, and we got right to work. She had packed her son’s truck full, and had brought along a dolly. We wanted to finish as soon as we could, because although we had enjoyed two days of nice weather — Tuesday was especially nice, almost summerlike — the temperature was supposed to drop, and we would be beset with rain, that would later turn to snow as the temperature dropped further. To be sure, we were under a tad bit of pressure!

Arlene called to see what was up, since I was not yet at work, and I told her that Gwen had arrived, and we were unpacking. She came over immediately to help out. Between Arlene, Gwen, and a gentleman who helped us with the last of the stuff, we finished literally minutes before the rain started. Gwen, Arlene, and I had a spot of breakfast at Pleasant Bunz, the little deli on the first floor of my building. David, the owner, is a really nice guy; he and I have had several good, long, talks over the months.

Gwen wanted to check out the Volunteers of America thrift store to see if they had any decent furniture, so Arlene took me to work. Later, Gwen came back, and I gave her a tour of the building, and introduced her to some of my colleagues.

Gwen had no luck at the VoA. Their stuff was quite expensive. Gwen, however, is quite the networker, and she managed to talk to the store manager, who told her about a place called Friends Helping Friends. After hanging out with us for a while, she went to check them out, and said that she would be back at 5:00 to pick me up.

At 5 on the dot, Gwen was back. She told me that she had bought me a table, a desk, and a couple of chairs, and the folks at Friends Helping Friends would be by at 9:30 tomorrow to deliver them. We then went to Wal Mart to get some groceries, then, we headed home. I needed to do laundry, so Gwen helped me with that, and meanwhile, we unpaked my clothes, and put them away. We then, unpacked some other knick-knacks, and put up the food. Gwen had brought me an air mattress and pump so that I wouldn’t have to endure the thin mattress that had served as my bed any more. We set it up, and it was huge, and quite comfortable! By the time we had dinner, and finished most of the laundry, it was late, so we hit the sack.

Thursday, the Ides of March. The day that certain members of the Roman Senate said, “To heck with this!”, and offed Julius Caeser for his excesses. Really, he should have listened to his mama, and the person who sent him the note. Perhaps, he’d have lasted a tad longer.

Anyway, I got off to work, while Gwen waited for FHF to come with the furniture. I finished a couple of reports, and set up an event that I’ll post about later. When Gwen came to pick me up at 5:30, we swung by FHF to pick up a couple of things and to meet the folks there. They are very nice, and FHF seems to be a grassroots operation.

Once home, we finished up the laundry, then, wiped down the furniture and set it up. We unpacked more boxes of stuff. By 11:30, we had unpacked everything save for a few boxes of books and ADAPT stuff, which I stored in the tidy little nook in the hall by the kitchen. We then went to bed, since Gwen had to get an early start to go back home. Since she would be gone before I awoke, I gave her a hug, and thanked her for all that she had done. She is a real friend!

Friday, I had a couple of meetings. One was with Jamie Penlon and Bill Beideck, from Monroe Ambulance. In addition to normal ambulance services, they provide medical transportation to people with disabilities and seniors to doctors appointments and the like. They were reaching out to us because they had encountered some problems with some of their clients, and wanted out help in coming to a solution. Several of their clients use motorized wheelchairs, and are terrible drivers, ramming into walls, the sides of the vehicles, and even other people! The folks at Monroe Ambulance wanted to be sensitive to these folks, and not seem demeaning, but something had to be done. They asked if it were okay to steer the person’s chair, themselves. We felt that as long as they asked first and explained the consequences if they refused, that would be fine.

Another issue that they wanted help on was people who were allegic to service animals. They wanted to know what they could do about that. We explained that under the ADA, those folks would have to be accommodated by having them ride alone, or with someone who did not have a service animal. The person with the service aniaml ould not de denied a ride, so that seemed to be the best solution.

I asked a question on behalf of a consumer whom I have been working with. I wanted to know if a person who was able to, has the right to fasten their seat belts, themselves, or was it required that the drivers do this. Jamie and Bill told me that if a person wanted to, they could fasten the seat belts, themselves, and if they were in a sedan, and wanted to shut the car door themselves, they could. I was glad to hear that, and explained that the consumer with whom I’d been working felt strongly about that. Indeed, she felt that it was an affront to her independence if she were not allowed to do these simple things, herself.

The meeting went quite well, and Monroe Ambulance would like for me to do some disability sensitivity training for their drivers. I am looking forward to workig with them.

I then had a meeting with a gentleman named Lane, who had pushed me home one incredibly snowy day. He had written about me for a class that he is taking, and wanted to interview me for a follow-up report. he is taking classes at the Damon Campus of MCC to be a paramedic. Lane wanted to know how he could get more involved in disability advocacy, so I took down his e-mail address so that i could keep him abreast of what is going on. I asked Lane if he knew if the Damon Campus had an office that served students with disabilities. I told him that we also speak to college classes, so he is going to check with his instructor to see if that is something that he would be interested in. Lane will drop back by in two weeks to give me an update.

I made it home, and really marvelled at how homelike my place has become. its all beginning to sink in. I called Time-Warner because my Internet was down, and though it took over an hour, they got the cable modem working again. I relaxed, and watched a DVD, then, went to bed for a while before getting up in the wee hours of the morning (Saturday, St. Patrick’s Day), to make this post. Happy St. Patrick’s Day to all!

Here are some cool little MFP payout facts…

Texas, California, Ohio, and New York will be getting the most MFP grant money.

States               5 year total           2007 amount
                         
Texas          $142,700,353            $143,401

California    $130,387,500            $90,000

Ohio            $100,645,125            $2,079,488

New York    $82,636,864              $192,981

Here is the breakdown of the people New York will be serving via the MFP grants. The main foucus will be on getting folks out of nursing homes and other institutions and getting them affordable, accesible, integrated housing.

Nursing Home Trans./Diversions 2800                                                                              

Elderly — 1190 

MR/DD — 140 

PD — 1190

MI — 280  

Duals — 0 
          
As you can see, in five years, we plan to free 5,600 people…1,120 folks a year!