Ohio Book Club for People With MR Featured

Congratulations to Dr. Tom Fish of the Nisonger Center at The Ohio State University. Today the Dispatch featured his successful Next Chapter Book Club for people with Intellectual Disabilities. They meet on Mondays at the Panera Bread on Bethel Road in Columbus; membership has been very stable. It is a wonderful social and educational outlet for this population.

Dr. Fish is also one of the nation's experts on the role that siblings play in the lives of people with disabilities - an area overlooked far too often.

Paula Rabidoux, who represents the Nisonger Center on the Ohio DD Council, is also very much involved in this program.

Although I know what it means, I did chuckle at one passage from the article....

The clubs are funded in part by grants from the Columbus Foundation and designed to encourage literacy in nonthreatening ways.

Read - or face the consequences! :)

Sounds like a great Club. I may have to check it out one day - if I'm allowed.

Ohio State to Begin Research on War Amputees

Ohio State and Indiana University have received a $2 million grant to open the Indiana-Ohio Center for Traumatic Amputee Rehabilitation Research. It will be the first center of its kind to focus squarely on the wholistic impact of being a war amputee.

This came out in an article in the Dispatch focusing on the ups and downs of life for soldiers returning from Vietnam as amputees.

"As of yesterday, there were 395 amputees from Operation Iraqi Freedom and Operation Enduring Freedom," (John) Farley (board member of the Amputee Center) said in an interview earlier this month. "We know them. We’ll continue to know them. We’re gonna keep track, because that’s how you learn."

Ohio's Important Role in Vocational Rehabilitation

Yesterday I gave a presentation to the Commissioners at the Ohio Rehabilitation Services Commission; just an update on what was going on at my agency.

I did make a public comment, though: I think RSC needs to add a page to their website to acknowledge the role that our state has played in the history of the state-federal vocational rehabilitation program. Based on the reaction I received, I think they will.

The gentleman on the left is Simeon Fess. He was from Yellow Springs, Ohio and lived from 1861 to 1939. He is a former president of Antioch College (now University) in Yellow Springs. He also served in the House of Representatives from 1912 - 1922, and the U.S. Senate from 1293-1935.

Anyone who received a Master's in rehabilitation counseling, as I did, learned in their Intro to Rehab class about the Smith-Fess Act of 1920. Mr. Fess was concerned about the soldiers who were serving overseas. Many were coming home as people with disabilities ("war cripples" in the lingo of the time).

Mr. Fess thought it the role of the government to establish a national network of training programs for wounded soldiers so they could have the vocational skills they needed to live independent lives upon their return. He was a main sponsor of the "Rehabilitation and Re-Education of Wounded Soldiers Act," AKA the Smith-Fess Act.

In 1917, Congressman Fess rose on the floor of the House of Representatives and offered the following speech in favor of the vocational training program:

My concern has not been so much the attitude of the community or business toward the war cripple. It is whether the Government will take steps to assure a sane utilization of human capacity by a course of governmental training to place in possession of the war cripple command of his powers, which otherwise would be as if nonexistent.

Our observations have convinced us that such possibilities are within our reach. What has been done in war-stricken Europe is simply marvelous. War victims who in past years would have reconciled themselves to a life of the derelict, pitiful and hopeless, subjects of public charity as it could be found on the streets, now know the self-respect and consequent pleasure of a life of independent production, which enables them to rebuke the mercenary alms giver by looking the world in the face and declaring that while he has left upon the battle fields what money can not buy, and has returned to his people with an emasculated frame, he disdains to depend upon the favor of any man, but insists what bread he eats shall be the bread of independence.

For 1917, that is one hammer of a speech for independence for people with disabilities.

He went on to author other important rehabilitation legislation, such as the Rehabilitation of the Industrial Cripple Act, opening the same types of services offered to soldiers to those who had been seriously hurt on the job.

His efforts were truly the cornerstone of what is now the state-federal vocational rehabilitation program, a program that has helped hundreds of thousands of Americans with disabilities lead independent lives of production. I think the recognition he deserves is long overdue.

One note of interest. The legislation that specifically created the modern state-federal vocational rehabilitation program was the famous Rehabilitation Act of 1973 . This law specifically repealed and replaced the Smith-Fess Act.

In 1998, the Rehabilitation Act was reauthorized by U.S. Senator Mike DeWine, a Republican from Yellow Springs.

Yellow Springs has produced two U.S. Senators - a rare feat. They were both Republicans - and if you have ever been to Yellow Springs, that one will leave you scratching your head as well. It's interesting that both of them played important roles in this history of this needed program.

DD Council Reviewing "Independence" Options

The Ohio Developmental Disabilities Council is an organization comprised of people with disabilities, parents of children with disabilities, and professionals who work in the field. There is a DD Council in every state and U.S. territory.

With money funded through the Developmental Disabilities Act, DD Councils distribute grant dollars to (mainly) non-profits organizations in their state that are doing good work with people with developmental disabilities. The Ohio DD Council gives out over $1.5 million in grants each year.

The Ohio DD Council is housed in the Ohio Department of Mental Retardation and Developmental Disabilities (MR/DD), a fact that has been both a blessing and a curse. The relationship with Director Ken Ritchey has been positive, but there have been times when the relationship with the Department itself has made it difficult for the Council to operate effectively. For the time being the DD Council is looking into changing the relationship with the department, and perhaps looking for alternative homes for the DD Council.

The employees of the DD Council are state employees, and part of the union. Working for the DD Council is a good job with decent benefits - something that is too often difficult to find in the disability field. The downside is that there are many times when the DD Council is viewed to be linked to the Department of MR/DD, making it difficult to collaborate and partner with organizations who are opposed to the department on specific issues. Simply put, many in the disability field see no difference between the Department of MR/DD and the DD Council, which is part of the Department of MR/DD. This hinders the effectiveness of the Council.

The Ohio DD Council is set up as an "independent" organization, not to be influenced by any government agency. The DD Council may and often does takes positions on legislation and state agency administrative rules that are contrary to the positions taken by the Governor and the Department of MR/DD. But the Director of the DD Council is listed as an Assistant Director of the Ohio Department of MR/DD, and the other staff hold union positions that are classified the same as dozens of other professionals who work in different areas of the Department.

Recently, the Department of MR/DD went through a downsizing. When this happens in state government, a process of "bumping" occurs - where employees with more seniority can "bump out" those in the same job classification in the same department. The Ohio DD Council was in danger of losing qualified, experienced staff. Executive Director Dave Zwyer argued to the Ohio Attorney General that the independence of DD Council required that Council staff be immune to such department actions, and that the Council would be harmed by such a policy. An initial ruling from Mr. Petro's office went against the Council. The bumping took place and a prized staffer was moved from Council to another area within MR/DD.

The DD Council is now looking at various options to secure our independence, both real and perceived. Those options include changing the job classifications of Council employees, switching departments within state government, starting a non-profit agency for the purpose of being a DD Council, and many others. The process will take time, but the Council is serious about making changes to help the Council operate as an effective, independent organization.

C&O will keep you posted on the latest developments.

Couple Who Caged Children With Disabilities Lose Custody

Today in Huron County a judge denied custody to the couple from Norwalk who put their adopted children with disabilities in cages.

The judge in this case had to go through all of the evidence; piece by piece, page by page. All of the experts, the testimony, the descriptions of the behavioral problems. But, at the end, you likely end up right at the beginning, facing the only fact that people will ever remember about this case: They put their adopted children with disabilties in cages.

I don't know how this case could have ever ended any differently.

I will never know the whole story of Michael and Sharen Gravelle, the couple who took 11 developmentally disabled children into their home. The children were all African-American - the Gravelle's caucasian. The children have special needs and are beyond the age preferred by most adopting couples. These children must have been among the most - if not the most -- difficult placements a county could face.

That is what makes the case so tough -- where are these children to go? What is to become of them?

I try to never, ever criticize county Children Services workers -- it's too easy. I think they have the toughest public-sector job in America; heartbreaking surroundings, abusive dynamics, countless state and federal regulations tying your hands. I applied once for that job, was offered the position, and had to turn it down because the hours didn't fit my grad student schedule. I think about that every time I see one of these stories. Would I even have been able to stick it out six months? Would my name end up on the 11:00 news if I made a mistake, or even if I didn't?

I pray that these children will find a home. In a sense, I applaud the Gravelle's for fighting for custody; I can only assume they cared about these children very much. But I don't think they ever had a chance in court. This case was over before it really started.

Doctor "Refuses" Intrepreters for Deaf Patients

A human-rights advocacy group based in North Olmstead staged a protest at the office of a local physician who, they say, is "unlawfully refusing intrepeters for deaf patients."

The doctor in question is Kornelia Solymos, who is described as a family doctor. The group staged a three-hour sit-in, to which Dr. Solymos did not respond. The group did get a somewhat sympathetic reaction from the director of the hospital.

One quick question: If this doctor is not allowing an intrepreter to attend, that is outrageous. But if she is "refusing" to pay for intrepreters for patients who need this service, that may be a different issue.

The issue is neatly summed up in the following exchange from the article...

"Protestors said doctors who refuse to provide interpreters are breaking federal law under the 1990 Americans with Disabilities Act.

But the equal-rights requirement is not clear-cut for small enterprises, which may not have to provide services that impose an undue burden, said Andrew Imparato of the American Association of People with Disabilities."

There is an economic reality-check to this issue. One response in Washington to cuts in Medicaid is usually to reduce reimbursement rates to doctors - making it financially less attractive to treat patients on Medicaid. If the doctor is, at best, breaking even when a Medicaid patient comes through the door, it is unreasonable to require them to pay for an additional intrepreter service for a patient who needs one.

No doctor in private practice is required to see Medicaid patients. Many can and do make a blanket decision to exclude this type of insurance from their practice. If a doctor is required to lose money to see a Medicaid patient, this type of decision would only become more commonplace.

I spoke with Karen Swan, a disability advocate in Cleveland, and she indicated that bigger hospitals, such as Metro, can offer this type of service that small private-practices may not be able to.

I sympathize with this group - but I think their issue may be more with coverage under Medicaid than with one doctor in North Olmstead.

Economists Say TEL Amendment Bad for Ohio's Future

Special thanks to Meg Kane, who sent this out in a broadcast email... Economic researchers at Cleveland State have issued a scathing report about the TEL amendment.

The TEL amendment is a statewide constitutional amendment that would place legal limits on the amount of money that Ohio's government is allowed to spend. The article did not specifically address the impact such an amendment would have on the disability community.

The real impact of such a policy would not only to be choke off needed services: it would also throw local governments into disarray, according to the report. If you need an example of how bad this type of amendment can be, just look at the fallout from the state of Colorado: In November Colorado passed a five-year moratorium on TABOR, because the public instititions out there are in complete funding chaos.

There is a broad base of support against this amendment - universities, disability groups, school boards, townships, county commissioners, public transportation institutions, firefighters, police, health care professionals, labor unions, senior citizens groups, faith-based organizations and library associations, among others.

Elected officials are sent to Columbus to make tough decisions -- if you don't want to make them, don't run for office. Make the tough calls and then MAKE YOUR CASE.

"Stop me before I spend again," is not good public policy -- it's just hiding behind a bad one. You are elected to do a job - don't expect the people of the state to do it for you.

Is Wrongful Birth a Disability Issue?

Talk about a complicated case... Schirmer v. Mount Auburn. Wrongful birth of a child with disabilities. Parents were allowed to sue, but only for the costs of the pregnancy.

This a tough one for the disability community on many levels.

In this case, the parents knew the mother had a genetic pre-disposition toward giving birth to a child with chromosomal abnormality called Trisomy 22 which causes mental retardation and severe birth defects.

The parents did not wish to give birth to a child with this condition, so they sought "genetic counseling." (Scary term, that.).

Tests were run, and the parents were told they had a healthy baby girl on the way. Several months later, they gave birth to a son with Trisomy 22.

The Shirmer's sued many people for millions. Some of it was settled, some thrown out, some withdrawn. But the crux of the issue before the Supreme Court of Ohio was whether the family could sue for "wrongful birth" when they have received negligent, incorrect information regarding genetic counseling.

The plaintiffs contend that had they received correct information, they would have terminated the pregnancy. And now they have a child that may require millions of dollars to care for throughout his life.

There are many things to note here -- but chief among them is the genetic test. This doesn't appear to be a situation where the test had a "margin of error," and the plaintiffs were merely in the "unfortunate" 5%. They believe the test was done correctly, but on the mother's tissue - not the fetus' (hence the prognosis of a healthy female).

Issues Worth Arguing About

Many in the disability community (if they were honest) would admit to leaning toward the Democratic party (Ohio has been decidedly Republican for the past 16 years, so there are a few who may be hiding close to the proverbial fence). The Democratic Party, with some exceptions, is pro-choice on the issue of abortion. But when you infuse disability into the equation, it makes the issue somewhat less clear.

This is also not a case where someone caused the condition, such as malpractice during the delivery. Many "wrongful birth" cases have involved couples who had vasectomies or tubal ligations, and ended up getting pregnant anyway. This is not the case in Schirmer v. Mount Auburn.

This child developed as he was going to develop - it's just that the parents thought
(s)he was healthy, and he was not. And for this reason, they claim they would have made a different decision. They did not want a child with this disability, and now they have one. It is just not a comfortable sight to see a child with a disability to be considered "wrongfully born".

On the other hand, a medical provider clearly failed in their duties, and in our system of medicince, negligent providers are held accountable. So efforts by the legislature to shield them are misguided as well.

In the end, the Supreme Court ruled that parents in this situation can sue, but only to reclaim the cost of a pregancy, labor, and delivery that they would have preferred to avoid. No claim can be made for the millions it may take to care for the child.

Where is the disability community to go with this one?

Technology Helping Kids Overcome Stuttering

There is a new type of technology that is can help children who stutter - it is called SpeechEasy. It is currently used by 5,000 people nationally. Stuttering usually appears between the ages of 2 and 6 and is more prevalent in boys. According to the company, 62% of users showed either some improvement or great improvement, while 38% had no improvement.

Vivian Topp, the speech pathologist who tested Jordan to see if he could benefit from the device, said it alters the pitch and delays the sound slightly to trick the brain into hearing a second voice speaking in unison. The voice can be adjusted to sound more like Darth Vader, but Jordan chose a higher-pitched tone.

"The whole point of the device is to simulate choral speech, like when you read aloud or pray aloud with others in your class or your church or synagogue," Topp said.

Sounds like progress to me.

Ohio has always been First in Flight - no matter what North Carolina says. And this week was no different.

C&O wants to offer congratulations to Stephen Hopson (right) of Akron for becoming the first deaf pilot to earn an IFR Rating.

An IFR rating allows a pilot to fly in poor weather and limited visibility, requiring the pilot to rely heavily on instruments.

Mr. Hopson contacted Assistive Technology of Ohio in an effort to research voice-to-text technology that could be used in a cockpit, allowing him to perhaps fly solo someday. As yet, no technology is accurate enough -- but that day will come.

Mr. Hopson is also a nationally recognized motivational speaker.



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