Senator DeWine Pays Tribute To Denise Weisenborn, Urges Passing of Medicaid Buy-In

On Tuesday, on the floor of the U.S. Senate, Mike DeWine gave a tribute speech in honor of Denise Weisenborn, who passed away in early May. Ms. Weisenborn, who had muscular dystrophy, was a lawyer and disability advocate from Cleveland.

I am working on getting a video link for the speech. Here is an excerpt...

Mr. President, ... Denise Weisenborn spent the last years of her life fighting for a Medicaid Buy-In program in Ohio. These programs, allowable in states under federal law since 1999, give people with disabilities the right to earn more money, and pay premiums to the state to help cover their health care costs. Medicaid Buy-In removes the powerful, institutional disincentive for people with disabilities to work.

If Ohio had a Buy-In program, Denise Weisenborn could have been even more independent by earning a living, helping Ohio cover her health care costs, and paying taxes.

Simply put, she could have been a lawyer. It is the independence for which she fought and wanted so deeply, and it is shame that Ohio did not give her that chance before she passed away.

I urge the state of Ohio to introduce a Medicaid Buy-In bill this year, so that Ohio -- and America -- can receive the full gifts of people like Denise Weisenborn.

Denise Weisenborn led a full and personally enriching life. She fought for people with disabilities and their right to find and sustain employment and to live independently. She dedicated her life to service and Ohioans with disabilities are much better for her efforts.

Mr. President, I continue to keep the family and friends of Denise Weisenborn in my thoughts and prayers.

Weaver Industries Fighting To Save Jobs For People With Disabilities

Weaver Industries, based out of Akron, is feeling to pinch of the new economy, and it is hurting their ability to hire people with disabilities. Weaver, according to the article, employs over 700 people, including 550 in its workshops.

They do a lot of packaging jobs for manufacturers, jobs that are now being automated or shipped overseas.

To compete, Weaver has expanded its marketing budget to reach businesses that would benefit from Weaver's services. Weaver is placing more ads and attending trade shows, such as the Great Lakes Industrial Show at the I-X Center in Cleveland this November, (Director Jeff) Johnson said.

Weaver has an active customer base of about 30 companies, including Whetherchem Corp. in Twinsburg, Northstar Plastics in Solon, ECOP Corp. in Fairlawn, Kong Co., in Akron and smaller, local businesses, such as Lunchology in Akron.

Weaver works in conjunction with the Summit County Board of Mental Retardation and Developmental Disabilities, Johnson said.

Blackwell Cites Washington Co. Elections Board for ADA Violation

Among other things. The Washington County Board of Elections was criticized in a report filed by Ohio Secretary of State Ken Blackwell.

(Board member Howard) Kitchen noted that the report says the board’s office is not accessible to handicapped individuals as mandated by the Americans with Disabilities Act

“We’re in violation, and I’m part of the board, so I’m held responsible,” he said.

They were also found to be in violation of state election law and the Ohio Sunshine Law, along with not having a "productive" work environment.

“Unfortunately, this is not a productive environment and threatens the public’s trust in the board of elections,” the report continued. “One clerk stated during her interview that she, the clerk, did not like the director’s flavor of chewing gum."

Some issues, it seems, are too big to ignore.

Plain Dealer Highlights Problem of Citizen Medicaid Rule in Ohio

For a state like Ohio, the requirement to prove citizenship to obtain or maintain Medicaid is going to end up being more of a hassle for citizens than an effective device to curtail illegal immigration.

In other states, undocumented immigrants attempting to pass as citizens may be a problem, but no one seems to believe it's a problem in Ohio.

"I'm unaware of undocumented immigrants in this area claiming to be citizens for health care," said Cathy Levine, executive director of Universal Health Care Action Network of Ohio, a nonprofit advocacy group.

Cathy has been providing a lot of leadership on this issue. The article also gives some good practical advice...

Sam Broadhead was born in Alabama but has lived most of his life in Ohio. In addition to Medicaid and Medicare, he also receives Social Security benefits. For one, his ex-wife has his birth certificate, one of the documents he will need to prove citizenship under the new law.

Depending upon how amicable the separation was, it might be a good idea to get that one back.

67 Ohioans Competing In National Special Olympics

The first-ever USA National Special Olympics is being held in Ames, Iowa. 67 Ohioans are on their way to compete, including 6 who are featured in the Toledo Blade.

"These games are an opportunity to create a national platform for people with intellectual disabilities," said Kirsten Seckler, the director of global communications for Special Olympics World. "We hope it will help change how our nation thinks about people with intellectual disabilities and that communities will begin to show more support for these individuals."

Support The Next Chapter Book Club

Thanks to Scott Lissner, ADA Coordinator at Ohio State

Have you been looking for a way to give back to your community? Do you have about one hour to spare each week? The Next Chapter Book Club is for you! The Next Chapter Book Club is an exciting program of the OSU Nisonger Center that promotes literacy, social connectedness, and community inclusion for adolescents and adults with intellectual disabilities. Book clubs meet weekly for one hour in bookstores and coffee shops such as Borders and Caribou Coffee. We are looking for volunteers to serve as group facilitators. A current facilitator reports, "We have all become real friends and to a great extent, have positively changed each other's lives." As a volunteer facilitator, you will be provided with training and ongoing support. If you would like to volunteer or learn more about the Next Chapter Book Club, please contact Program Coordinator Jillian Ober at ober.7@osu.edu or visit our website at www.nextchapterbookclub.

Mind-Reading Computers for People with Autism?

Found a semi-spooky letter to the editor from the Times in London. Seems that engineers at MIT are building computers that are very adept at reading the emotions of people. It is being sold as a way to help people autism who have great difficulty picking up on the emotional states of those around them. They call it an "emotional hearing aid."

But there is a potentially darker side.

"Such systems do raise ethical issues," Dr Robinson says. "Imagine a computer that could pick the right emotional moment to try to sell you something."

The system is going to be on exhibit in London this summer.

Another Case From Central Illinois

Another Central Ohio mother is facing charges involving a child with severe disabilities. Kellie Waremburg is charged with giving her daughter, who has severe cerebral palsy, a "potentially lethal cocktail" of medication.

Waremburg told police she decided to give the mixture to her daughter to get her "to go to sleep and not wake up."

The child, Lexus Fuller, also has to be fed through a feeding tube, is physically handicapped and uses a wheelchair, has blindness and mental retardation, all of which can be related to cerebral palsy.

The case is eerily similar to another case in central Illinois, where Karen McCarron is accused of intentionally killing her daughter who had autism.

McCarron was a physician. Early reports are that Waremburn is a substitute special education teacher.

CMS Approves Level 1 Waiver

Many thanks to the Arc of Ohio for the update...

CMS Approves Ohio's Level One Waiver Renewal

The Chicago Regional Office of the Centers for Medicare and Medicaid Services (CMS) has approved Ohio's request to renew its Level One waiver program for an additional five-year period, effective July 1, 2006.

The CMS letter of approval, dated May 31, permits the state to increase the number of program participants for the current level (3,214) to a maximum of 5,134 during the first year of the renewal period. The average per capita cost of waiver services is expected to grow from $14,258 during Year One of the waiver renewal period to $16,922 in Year Five.

The Level One Waiver program was launched in May 2003 as part of a MR/DD waiver redesign initiative approved by the Ohio Legislature. This waiver program is operated by the Ohio Department of Mental Retardation and Developmental Disabilities (ODMR/DD) under an interagency agreement with the state Department of Jobs and Family Services, the single state Medicaid agency. The aim of the program is to provide a streamlined set of services for individuals with mental retardation and other developmental disabilities who plan to remain with their families, including homemaker, personal care, transportation, and respite services. ODMR/DD also operates another Medicaid home and community-based waiver program for the MR/DD population called the Individual Options Waiver program. This program also covers day and residential habilitation services, including services furnished in out-of-home living settings. As of early June, 11,635 individuals were enrolled in the Individual Options Waiver program.

FMI: Links to the CMS/Regional V approval letter, plus a copy of the state's full Level One Waiver request, are posted on the home page of ODMR/DD's website http://odmrdd.state.oh.us.

Massachusetts School Using "Skin Shock" Treatment on Students With Disabilities

A school for disabled students in Massachusetts has been found to have been using a type of "shock" treatment to control the behavior of students with disabilities.

Before I get back to the issue of shocking students with disabilities in order to control them - one sentence from the article did grab my attention....

The school in Canton, Mass., receives $50 million a year from Albany to care for and educate about 150 youths because there is no space available in New York for the intensive treatment.

It's OK - I ran the numbers. That is $333,333.33 per student. Per year. Am I on Mars? Ohio's Autism Scholarship runs about $17,500, and people are complaining about that money leaving local school districts. That "intensive treatment" in Massachusetts better include a golf club membership, a day spa, and a pension plan. I'm not getting this one.

But back to the issue at hand. The state of New York is demanding corrective action or they are going to withhold the money and remove the students.

"It all comes down to a philosophical opposition to this form of treatment," (the school attorney) said. He said the center will fight the accusations. All other parents prefer the treatments to heavy medication, he said.

The Rotenberg Center provides an intensive, 24-hour program that begins with a typical school setting, but about half the residents require the "aversive therapy" of electric shock, according to Rotenberg staff. The weekly shock of one or two seconds each is similar to being pinched as hard as possible, or like a bee sting.

For years, the state has contracted with the facility, where disabled students wear backpack-like devices that provide shocks of varying duration when they misbehave.

Woman With Brain Damage Being Evicted Over Service Dog

A landlord in Ashtabula is suing to evict a tenant who has brain damage because of some complaints over her service dog.

Barbara Hasenstab, spokeswoman for Associated Estates Realty Corp., in Cleveland, owner of the building, said she has at least 10 complaints about Asiah's barking. Several people have accused the dog of aggression.

Dudley said the dog is trained to protect her and lunged at several youths who harassed her.

Tenants at the complex can have service dogs, but Hasenstab said Asiah does not seem to fit the criteria. She declined to discuss her reasoning.

How about this for "reasoning?"

Walking across her bedroom or anywhere else is a chore for Robin Dudley, who suffered brain damage in a car accident and is always in danger of falling, but her German shepherd, Asiah, gets her through the day.

Asiah fetches clothes and shoes in the morning so Dudley can get dressed. Asiah stays by Dudley's side to give her support when she does walk. And Asiah watches for Dudley's occasional seizures, howling to summon aid.

Hey maybe, just maybe, the dog was barking BECAUSE SHE WAS HAVING A SEIZURE. Obviously we can't have that. That can be annoying.

I have a golden retriever, and if I asked her to bring me my shoes, she would eat them. Asiah sound like a service dog to me.

Citizen Medicaid Rule On Hold In Ohio

Ohio is delaying the enforcement of a July 1 deadline for requiring Medicaid applicants to prove they are U.S. Citizens before receiving benefits.

The requirement is getting criticism from advocates for the poor who say it will cause hardships for the mentally ill, the homeless and victims of natural disaster who do not have their records.

"The only people who are going to take the brunt of this new rule are U.S. citizens," said Cathy Levine, executive director of the Universal Health Care Action Network in Columbus, a nonprofit advocacy group.

All people applying for Medicaid or renewing their coverage will be required to show a passport, birth certificate or other documentation.

Many states, including Ohio, now require people to check a box on their applications to attest, under penalty of perjury, that they are citizens.

Deaf Soccer Star Lauren Dooley Takes It All In Stride

Lauren Dooley is a 14-year old soccer star from Cincinnati. She is attempting to make the national deaf soccer team later this month is Santa Barbara. If she makes the team, she will compete for the U.S. in the Deaflympics in 2009 in Taiwan.

Lauren is profoundly deaf and uses a cochlear implant. She is scheduled to have an implant in the other ear later this year.

“I could hear my sister (Emma), I could hear the birds, the toilet, the dogs. I could hear everything,” said Lauren, who wears head gear during games to keep the processor in place. “I still say ‘What’s that?’ to this day when I hear new things.”

Dooley arrives in California Wednesday. The training camp will mark her first experience playing with an all-deaf team.

“You just get to play soccer with people that are just like you,” Lauren said. “No questions asked. You’re just out there playing with them.

“I know it’s going to take hard work and dedication. With everything I’ve been through, I can do it.”

British Doctors Want To "Screen Out" Embryos With Autism

A group of doctors at one of England's leading hospitals has applied for permission to begin using a screening test to try to reduce the likelihood that children with autism will be born.

The doctors want to use a technique knows as pre-implantation genetic diagnosis (PGD), which has been used in the past to screen babies for Duchenne muscular dystrophy and hemophilia. With this technique, couples who are known to have a family history of autism can choose to have only girls, who are 4 times less likely than boys to develop autism.

Couples requesting the procedure would need to go through a gruelling in-vitro fertilisation cycle, even though they had no difficulty conceiving naturally. The technique could be used only to prevent the hereditary form of autism, which affects about 10% of cases. It is not known what causes autism in many children.

The development would be strongly opposed by disabled groups. Simone Aspis, parliamentary and campaigns worker for the British Council of Disabled People, said: “Screening out autism would breed a fear that anyone who is different in any way will not be accepted. Screening for autism would create a society where only perfection is valued.”

Nearly 800,000 Ohioans Now Have Prescription Drug Coverage Through Medicare

The government has announced the final enrollment numbers for the prescription drug plan through Medicare.

Of Ohio's approximately 1.8 million potential Medicare beneficiaries,
over 78.1 percent now have some kind of drug coverage, either through a
Medicare prescription drug plan or through other plans -- for example,
health plans provided by former employers.
    "The enrollment numbers have exceeded expectations. The new Medicare
prescription drug program offers savings and security, and Medicare
beneficiaries are satisfied with the benefit," says Jenny Camper of the
Medicare Rx Access Network of Ohio.

Packaging Industry Encouraged To Remember People With Disabilities

Michigan State University is hosting an international conference on "trends and challenges in packaging design." The conference is offered through the MSU School of Packaging at the James B. Henry Center for Executive Development.

This year, the conference is focusing on the troubles that certain people have with opening packages.

Ellen Weaver was delighted to receive a bouquet of 18 multi-colored roses for her birthday two weeks ago.

That delight quickly turned to frustration when it took her 10 minutes to open the package.

For senior citizens and people with disabilities, opening packages can be a daily struggle that gets in the way of being self-sufficient, said Weaver, who has lost some motor control in the right side of her body.

"Packaging designers are often able-bodied and think of themselves as the standard when designing packaging," said Laura Bix, an assistant professor at the packaging school who is a co-director for the conference. "The challenge of packaging today is to consider people with less than perfect vision and dexterity."

Betty Montgomery Is Back In The Game

Great to see that Betty Montgomery, our State Auditor, has recovered from her bought with Guillian-Barre Syndrome, a condition that often leaves people paralyzed for signficant periods of time before healing occurs.

An elected official for the past 25 years, Montgomery said the experience taught her to lighten her load a little and to value each day.

"I hope that I’ve learned from this experience in terms of taking care of myself a little more," she said. "I’m hope I’m a better person for it."

Guillain-Barre syndrome strikes about one person in 100,000 and has no known cure, according to the National Institutes of Health’s National Institute of Neurological Disorders and Stroke.

But the syndrome generally strikes only once. Only about 3 percent of people with Guillain-Barre suffer a relapse, the NIH said.

Medicare Changes Requirements for Wheelchairs

Thanks to the Indiana Tech Act agency for the update...

The Center for Medicare and Medicaid Services (CMS) published a final rule on Medicare payment for power mobility devices (PMDs).... Taking effect June 6, 2006, the new rule officially defines power wheelchairs and power-operated vehicles or scooters.

...CMS is eliminating the formerly required Certificate of Medical Necessity - the checklist signed by the prescribing specialist to accompany claims for power wheelchairs and scooters -- easing the paperwork burden that many disability advocates say impedes qualified beneficiaries' access to needed equipment.

The rule formally implements Medicare's face-to-face examination requirement-provision of the Medicare Modernization Act of 2003 -- which makes it necessary for a physician or treating practitioner to conduct a face-to-face examination of the beneficiary before prescribing a PMD.

But Peter Singer Is Not Impressed

Let's see, I've got stories about blind golfers, a paraplegic Olympic athlete, an award-winning film maker, a deaf golfer playing on the professional golf tours, and the first deaf pilot given the certificate to fly by instruments alone.

Meanwhile, you have the brilliance of everyone's favorite eugenicist, Peter Singer of Princeton, who questions whether all of this was really worth the trouble (thanks to The Mote In The Light Blog).

From his own personal website, Dr. Singer states,

Q. You have been quoted as saying: "Killing a defective infant is not morally equivalent to killing a person. Sometimes it is not wrong at all." Is that quote accurate?

A. It is accurate, but can be misleading if read without an understanding of what I mean by the term “person” (which is discussed in Practical Ethics, from which that quotation is taken). I use the term "person" to refer to a being who is capable of anticipating the future, of having wants and desires for the future. As I have said in answer to the previous question, I think that it is generally a greater wrong to kill such a being than it is to kill a being that has no sense of existing over time.

Newborn human babies have no sense of their own existence over time. So killing a newborn baby is never equivalent to killing a person, that is, a being who wants to go on living. That doesn’t mean that it is not almost always a terrible thing to do. It is, but that is because most infants are loved and cherished by their parents, and to kill an infant is usually to do a great wrong to its parents.

Sometimes, perhaps because the baby has a serious disability, parents think it better that their newborn infant should die. Many doctors will accept their wishes, to the extent of not giving the baby life-supporting medical treatment. That will often ensure that the baby dies. My view is different from this, only to the extent that if a decision is taken, by the parents and doctors, that it is better that a baby should die, I believe it should be possible to carry out that decision, not only by withholding or withdrawing life-support – which can lead to the baby dying slowly from dehydration or from an infection - but also by taking active steps to end the baby’s life swiftly and humanely.

Neroli Fairhall, first paraplegic Olympian, dies at 61

Ms. Neroli Fairhall died on June 11 from complications arising from her disability.

The New Zealander was the first paraplegic to complete in the Olympic Games. Not the Paralympics, mind you, although she did compete in those as well. I mean the OLYMPIC GAMES, as in the Games of the 23rd Olympiad in Los Angeles.

Ms. Fairhall was injured in a motorcycle accident, leaving her paralyzed from the waist down. Her desire to be an athlete led her to archery. She excelled in her new sport, making the New Zealand national team, and finishing first in the Commonwealth Games in 1982. In 1984 she finished 35th in the Olympic Games in Los Angeles.

Some rivals at the Olympics suggested Fairhall enjoyed an advantage in shooting from a sitting position.

The controversy waned when, asked whether that was so, she replied: "I don't know. I've never shot standing up."

"Thumbs Down To Pity" Wins National Award

Benjamin Snow, 19, of Woodland Park, Colarado, has won a national Award for his short film, "Thumbs Down To Pity," a film that criticizes Hollywood's portrayal of people with disabilities.

Click here to view "Thumbs Down To Pity." (the film is only 1 minute long).

Two Ohioans To Play In Elite National Blind Golf Tournament

Walter Dietz of Berea and Ron Murner of Wellington are scheduled to play in the prestigious Ken Venturi Guiding Eyes Golf Classic at the Whippoorwill Club in New York.

Blind golf is played under USGA rules with one modification - a club may be grounded in a hazard. Each blind player also has a sighted coach who helps with yardage, club selection and alignment.

I can see, and I can't play golf. These guys must be amazing. And I'd hate to see the rules that I play under put to paper.

11,000 Await Social Security Hearings in NE Ohio

While Congress is considering cuts that would add to the backlog. Cleveland's backlog is the fourth highest in the country, behind only Tampa, Birmingham and Buffalo.

The applicants wait an average of 597 days -- up more than 50 percent from 344 days in January 2004 -- but some run out of time. Local lawyers have reported that dozens of their clients have died while waiting for a hearing date.

Time In A Wheelchair Helps Open Judge's Eyes

A Court of Common Please Judge in Columbus had to spend a few months in a wheelchair following hip replacement surgery. Judge Eric S. Brown indicated that he new has "a much greater appreciation" for the challenges faced by people in wheelchairs.

For the first time, he noticed poorly accessible restroom stalls and hard-to-reach elevator buttons and door handles at the Franklin County Courthouse.

"I spent most of two months in a wheelchair or with a walker," he said. Getting around both inside and outside the Hall of Justice "turned out to be a real challenge."

To quote Bruce Willis from Diehard, "Welcome to the party, pal."

Urge Congress to Increase Pay for Direct Support Professionals

Thanks to Paul Jarvis of DDC for the Action Update...

Dear Advocate:

Legislation is currently pending in Congress that would provide direct support professionals an increase in basic pay. Did you know your home care assistant is paid at a lower rate than other professionals providing similar services?

In fact, people who care for dogs, cats, fish, zoo animals and mice are generally paid a higher wage than direct support professionals! Is this how the government views caring for individuals with disabilities?

Direct support professionals provide a vital service to individuals with disabilities so they can live independent lives in the community setting of their choice. Without personal assistance services, the only choice for people with disabilities would be to live in expensive institutional settings.

It is estimated the turnover rate for direct support professionals is approximately 75 percent. Additionally, demand for personal assistance services is expected to grow by 62 percent over the next four years as Americans grow older. How can individuals with disabilities depend on quality direct support professionals when there is so little incentive to be employed as one?

It’s not to late to do something about this. Right now, Congress is considering providing states additional money in order to increase the wages of personal assistants providing services to individuals with disabilities. Write your Congressman and ask him or her to consider supporting HR 1264, the Direct Support Professionals Equity and Fairness Act of 2005.

Fairfield Facility Now Under a Microscope

The Fairfield Center in Cincinnati, as one would expect, is now receiving close scrutiny after the death of one of its residents earlier this year.

In the lastest incident, a resident was found wandering on a nearby road just after 8:00 a.m. on May 30.

A center employee driving into the campus found the man and took him inside. The employee assigned to watch him told state inspectors that she was unaware close supervision was required because she did not read the resident's treatment plan.

She said she didn't have time because she was transferred that morning from her regular duties in another cottage, according to documents filed with Ohio Department of Mental Retardation and Developmental Disabilities.

Knox County Privatizing MR/DD Services

In news from Mount Vernon, the Knox County Board of MR/DD voted to privatize some of the services previously offered by New Hope Industries, which was run by the county board.

Despite heavy opposition from area residents and county officials, the Knox County Board of Mental Retardation and Developmental Disabilities voted to adopt a resolution which will turn adult day services, currently provided through New Hope Industries, over to private providers.

Kevin Hall On The "Cut" Line

Kevin Hall finished his first round at the Knoxville Open at -1. He is currrently tied for 54th place, and that would get him through to the weekend.

He is (I believe) trying to make his first cut on the Nationwide Tour this year.

Click here for updates.

Kevin Hall Playing In The Knoxville Open

Kevin Hall is still gutting it out. This week he is playing in the Knoxville Open on the Nationwide Tour.

Last week he started well - even par after the first day. At one point he was 3 under. Then he exploded on day two with an 82. That's not going to get it done on any Tour. He just needs to keep getting opportunities to play, which he has this week.

Forget the U.S. Open - click here for updates on Kevin's progress at the Knoxville Open.

Waiting to End the Medicare Disability Waiting Period

This June marks the one year anniversary of the introduction of S. 1217 - the Ending The Medicare Disability Waiting Period Act of 2005.

The bill, introduced by Senator Jeff Bingaman and Senator Mike DeWine has yet to have a hearing.

According to the EFFORTS,

Before they can get Medicare coverage, people with disabilities must first receive Social Security Disability Insurance (SSDI) for 24 months. But SSDI generally does not begin until five months after an individual’s disability has been certified. As a result, people with disabilities face three consecutive waiting periods prior to getting health coverage: (1) a determination of SSDI approval from the Social Security Administration; (2) a five-month waiting period to receive SSDI; and, (3) another 24-month waiting period to get Medicare coverage

In addition, according to the Commonwealth Fund

About 1.2 million people with disabilities are in the 24-month Medicare waiting period and at least 400,000 have no health care coverage. Four percent of people die each year while waiting for their Medicare to begin, according to a study by the non-partisan Commonwealth Fund.

The Medicare Rights Center is pushing the issue, writing a letter to Senator Grassley to try and move the Senate to have hearings on this important legislation. You can reach his office at 202.224.3744. You can also contact Senator Max Baucus (the ranking minority member of the Committee) at (202) 224-2651.

Disability Studies Leader at Univ. of Toledo "Reassigned"

Mark Sherry, a professor at the University of Toledo, is no longer the director of the disability studies program at the college. He will remain as a professor in the department of sociology and anthropology.

The program receives large donations from the Ability Center in Toledo. According to the article, he was often at odds with the Center, including some complaints over his behavior.

Organ Transplants Just As Successful In Those With Mental Retardation

It's sad that this type of research is necessary - but kudos to Ohio State University for bringing this research to the public eye. The Nisonger Center at OSU continues to be a world leader on the issue of organ donation and people with disabilities.

A survey of published cases worldwide found that the one-year survival rate for people with mental retardation who received kidney transplants was 100 percent, and the three-year survivor rate was 90 percent.

"That's comparable to national survival rates for the overall population, said Steven Reiss, co-author of the study and professor of psychology and psychiatry at Ohio State University .

"From these results, there doesn't seem to be any reason to think the mentally retarded are not good candidates for transplants."

Coral and Opal Back in Business

To the thousands of fans of this blog, sorry about the long layoff. I was in Virginia with the family over the weekend and then at a national assistive technology conference in Baltimore until last night.

C&O is now back online.

Adaptive Bikes Teach Kids with Disabilities How To Ride

In today's Toledo Blade, there are a few pictures of children with disabilities learning to ride bikes. They are taking part in the Rainbow Trainers Bike Camp at Hope School in Westhope, Ohio, in Henry County. At right is Nick Johnson, 8, of Delta, Ohio.

Rainbow Trainers are adaptive bikes specifically set up to teach children with special needs how to ride bicycles.

Another website that uses Rainbow Trainers bikes can be found here.

Kathleen Parker on "Imperfect" Children and the Roe Debate

I love the work of Kathleen Parker. She is a great writer. In today's Dispatch, she has a column about the issue of people terminating pregnancies due to diagnosed imperfections-- clubbed feet, 6th digits, a cleft palate or part of a foot missing.

The list of accomplished people with birth defects, meanwhile, is long. Two born with clubfeet are Kristi Yamaguchi, the 1992 Olympic champion figure skater, and U.S. Rep. Thaddeus Stevens (1792-1868), who helped draft the 14 th Amendment and the Reconstruction Act.

Imagine what our cultural conversation would have been without Soren Kierkegaard, the Danish existentialist philosopher who was a hunchback with uneven legs. Or Juan Ruiz de Alarcon, the 17 th century Mexican dramatist, who also was a hunchback and wrote some 20 dramas including La Verdad Sospechosa.

Translated, The Suspicious Truth is an apt title for the argument that reproductive choice always trumps all other considerations, or that any and all birth defects conscribe a child to a life not worth living.

Kevin Hall Playing Again This Week

On the Nationwide Tour. After missing the cut at the Memorial, Kevin has received another sponsor's exemption to play in the The LaSalle Bank Open at the Glen Club in Glenview, Ill, on the Nationwide Tour.

You can monitor his progress hole-by-hole by coming back to Coral and Opal.

The Perspective on Autism from Tiffin

There is an article in the Tiffin newspaper today about a family raising a son with autism. There is an interesting disclaimer:

The names in this story have been changed because the parents don't want their son recognized as being autistic.

It's a pretty basic article about the types of services that can benefit a child with autism, but it is worth noting that nothing in the article referenced the national and international tragedies that have occurred lately.

Jane said the sooner people seek help for their children, the sooner the children start to develop.

John said it's been a team effort to figure out what Joe needs, and the purpose of intervention is to prepare his son to learn in a traditional school setting. He said a lot of the intervention is by trial and error and doing the best he and his wife can do for their son.

"We wouldn't wish (autism) on anyone because it's a challenge, to say the least, but it's been the best thing in a lot of ways," he said. "It's taught us a lot about ourselves."

Let Washington Know The Difference The ADA Has Made In Your Life

Thanks to Jackie Martin for passing this along. Please take a minute and complete an online survey to show the impact the ADA has had in your life.... Click here to get to the ADATA website, and then click on the link under "Share Your Opinions!" and a new page will come up with the survey. Please take a moment to make a difference and protect this important law.

From: Justice For All Moderator
Date: June 6, 2006 2:42:07 PM EDT
To: justice@jfanow.org
Subject: Has the ADA Made a Difference in Your Life?


The national network of ADA & IT Technical Assistance Centers,
also known as DBTACs, seeks your comments on your experiences
with the Americans with Disabilities Act. Your feedback on your
experiences in employment, building access and access to public
services will help the Centers to identify training gaps and
issues needing increased technical assistance. Visit the online
form and tell us what has worked for you, what barriers you
still encounter, and how the ADA has made a difference in
your life. The survey will only take a few minutes and is
confidential. The only identification requested is the state
in which you reside.

If you have not already completed this survey, please take a
moment to do so. Also, if you know of others whose lives have
been impacted by the ADA, please forward to them.

Thanks for assisting us; we are interested in your successes
and concerns!

Visit www.adata.org and share your experience (the survey is
on the center of the webpage, click on: Share Your Opinions!).

Novelist Cammie McGovern Weighs In On Recent Autism Tragedies

Cammie McGovern, author of the novel "Eye Contact," wrote an interesting column in the Amherst (NY) Times referencing the three recent killings by parents of children with autism (one in England and two in the U.S.).

McGovern is the mother of a 10-year old with autism. Her novels have often woven the issues of autism and other disorders into the story lines.

Clearly there is a message in the recent deaths about the urgent need to increase support for the rising number of families struggling with autism. Having an autistic child is estimated to cost a family $10,000 to $50,000 a year in out-of-pocket expenses for medical treatment, therapy and education. With 50 new diagnoses of autism in this country every day, support services are already too stretched to meet the need...

Now, as the mother of a 10-year-old, I will say what no parents who have just discovered their child is autistic want to hear, but should, at least from one person: I've never met a recovered child outside the pages of those old books. Not that it doesn't happen; I'm sure it does. But it's extraordinarily rare and it doesn't happen the way we once were led to believe.

Butler Co. MR/DD Board "Taken Aback" By Lawsuit

The Butler Co. Board of Mental Retardation and Developmental Disabilities is surprised they were named as defendants in the $20 million lawsuit filed by the family of Joseph Beaudoin, who was killed February 21 by a fellow resident of the Fairfield Center.

In a written statement issued this week, MRDD Communications Coordinator Lori Duffey said the Butler County MRDD Board was not involved with Shuman’s placement at the Fairfield Center, nor did it have any knowledge of his history of violent behavior.

According to Duffey, prior to being transferred to the Fairfield Center, Shuman was a resident of a state-operated facility in Batavia and received services from the Hamilton County Board of MRDD.

Duffey said Shuman was placed at the Fairfield Center after state MRDD officials told his family that he could no longer stay at the Batavia facility because his condition had improved and he needed to be in a “less restrictive” facility.

Duffey said Shuman was placed at the Fairfield Center on an “emergency” basis because there was no space at other facilities in Hamilton County.

Duffey also noted that the Butler MRDD board owns the Fairfield Center building, but leases it to ViaQuest, Inc. which provides its own management, operation and services at the facility.

Additionally, Duffey said the Fairfield Center is licensed by the state department of MRDD and receives its ongoing certification through the Ohio Department of Health.

DD Council Needs Your Help

The Ohio Developmental Disabilities Council needs your help -- and it has to happen today. This is from Paul Jarvis, DD Council Public Policy Staffer...

Friends,

The House Appropriations Committee on Education/HHS/Labor has scheduled a
mark-up for the budget for Wednesday, June 7th. This Committee is chaired
by Ohio's own Congressman Ralph Regula. In this budget is the proposed
funding for DD Council's nationwide.

We are asking that everyone contact Chairman Regula's office to ask
for the inclusion of $84.5 million in the Education/HHS/Labor budget. Our
timeline is very short on this one. Because the hearing is scheduled for
Wednesday, we are asking that all calls be made by the end of business on
Tuesday.

Additionally, we are providing a short
message for advocates;

"Dear Chairman Regula,

During this week's markup of the House Labor/HHS/Education spending bill,
please provide $84.5 million to state Councils on Developmental Disabilities
under the Developmental Disabilities Assistance and Bill of Rights Act (DD
ACT). Thank you for your continued leadership and support on behalf of
people with developmental disabilities in Ohio.

Thank you,"

Act Now!!!! The contact staff in Congressman Regula's office is Viquar Ahmad
(per Congressional Yellow Book 2006) - at (202) 225-3876.

Sincerely
Paul Jarvis
Liaison Officer
Ohio DD Council

New Philly Family To Push For More Medicaid Funding For Children's Hospitals

The Frantz familyof New Philadelphia is heading to Washington, D.C., this month to advocate for more Medicaid funding for Children's Hospitals nationally.

Zack, 8, was born with cerebral palsy, and his family has relied on Medicaid to help with his medical costs. After he was born in Union Hospital at Dover, he was transferred 24 hours later to Aultman Hospital at Canton. He was referred to Rainbow Babies, but has had to visit clinics in Cleveland as well as in Akron. Lately, though, his care has been focused in Akron.

The trip is being sponsored by the National Association of Children's Hospitals and Related Institutions.

ADA Zoo Day Set for July 26th