Stem Cell Treatment Trials for Autism

Today, I have been doing a little light reading about stem cell treatment and studies in other countries.
The following article discusses a treatment and trial in Greece:

"Wednesday, April 14, 2010
Autism and Experimental Stem Cell Treatment
Attached is part of a PR Web Press Release for a clinical trial application being submitted to Greek authorities by AdiStem Tehcnology. It indicates that a group of doctors in Greece are preparing a protocol for submission to the Greek Ministry of Health for an official clinical trial of stem cell treatment on children with autism spectrum disorders:

The stem cell technology developed by AdiStem for the past 5 years has been used and trialed by doctors around the world for the treatment of type II diabetes and its complications, osteoarthritis, and cosmetic medicine. Physicians in Greece approached the company recently with the intent to treat Yannis, the son of Dr. Solomos, a cardiologist. Yannis, a 9 year old boy, had been diagnosed with autism but not responded to standard treatments.

An experienced doctor, the father, Dr Solomos, carefully reviewed the case studies of other children with Autism who had received the AdiStem stem cell treatment in Europe and Asia, and was convinced of its safety and potential for improving the condition of his son. With the help of experienced pediatric surgeons Yannis underwent an hour long mini-liposuction procedure at Kratiko Nikaias Hospital in Athens in which 200cc of abdominal fat was harvested. The fat was dissolved, the stem cells isolated and then activated, and over 100 million cells were returned to Yannis through a standard intravenous drip. Yannis was discharged on the same day.

Just one month later, his father was astonished to hear Yannis talking to him on the phone for the first time. Dr. Solomos explained: "my boy has simply not been able to speak to me on the phone before". Asked if he’d noticed any other changes, he replied: "His school tells me his attention has improved. We experience him nearer to us and he feels us. I see a change in his ability to connect with other children. He plays with them now, which he used to avoid. He has also become more interested in letters and numbers". (This interview with Dr.Solomos was recorded on video and can be viewed at "www.adistem.com/application/autism.htm").

Present during the treatment, Dr. Koliakos, Associate Professor at Aristotle University and President of Hellenic Research Foundation Stem Cell Bank pointed out: "One month after the therapy Yannis has shown remarkable progress according to his father's observations. The child will be reevaluated by pediatric psychiatrists 3 months after the therapy to measure the extent of progress in his condition and to decide if the remainder of his stem cells, presently stored in liquid nitrogen, should be administered".

Dr.Kolaikos continued: "We're convinced about the safety of intravenous adipose stem cell therapy – if supported by accredited facilities – and our team has now applied for a large formal clinical trial on autism using AdiStem's stem cell protocol here in Greece".

Terry Grossman, M.D., stem cell researcher from Golden, Colorado said, "I was present to observe 9 year old Yannis undergo the stem cell procedure at the Kratiko Nikaias Hospital in Athens. Further studies are needed, but it is possible that stem cell therapy will soon be available as a powerful new tool to help children with autistic spectrum disorders."

There is much controversy surrounding most aspects of autism spectrum disorders including issues concerning treatment and research involving children. In this case the PR Web press release states that a trial was run with a child whose father, an experienced medical doctor, consented to his participation after reviewing case studies involving other children with autism who had received the treatment. The father, a medical doctor, also provide his observations which indicated substantial improvement in his son's condition. The procedure was performed by experienced pediatric surgeons and is vouched for by a Greek professor and researcher as being safe when administered at a proper facility. In addition to the father's observations the child will be seen at follow ups by pediatric psychiatrists for further measurement of his progress and for a determination of whether to continue with the treatment.

The procedure itself was observed by an American stem cell researcher/doctor who says further study is needed but that but it is possible that stem cell therapy will soon be available as a powerful new tool to help children with autistic spectrum disorders. The research team involved has applied for a large formal clinical trial on autism using AdiStem's stem cell protocol.

It will be interesting to see what comes of the Adistem application and formal clinical trial results. This father of a severely autistic 14 year old boy has insisted that my son receive only evidence based interventions and I will not depart from that principle. But I do not close my mind to new interventions either if they are subsequently supported by a strong evidence base. If responsible studies conducted safely, produce credible results and provide reliable evidence of new interventions that could help my son then I would want, in consultation with trusted professional advisers, to consider new interventions for his benefit.
It remains to be seen whether the AdiStem trials will provide such evidence but in the meantime this father of a severely autistic son will keep an open mind on the subject. "

Are clinical trials being conducted? Yes. Copy and paste this link to see a report on an NIH study that has been completed in China. I would like to know what the results of this study were, but this website does not give them. http://clinicaltrials.gov/ct2/show/NCT01343511

I have viewed a number of interviews of some parents in the U.S. who have taken their children to Costa Rica and Panama, and paid $15,000 for stem cell treatments there in clinics. Another parent in Australia took her son to China for the treatment and paid $35,000 for it. Desperate parents who have found relief for their children nowhere else are taking their chances now, rather than waiting for the evidence of clinical trials.

So far, my reading has only uncovered anecdotal reports by families. I will be watching to see what the studies reveal about the true benefits or lack thereof of this treatment.

Anesthesia for Dental Care

Dental care for a person with a developmental disability can both ineffective and a nightmare without the use of anesthesia. This is an important issue and needs to be addressed.

"Dentists want insurers to pay for anesthesia for patients with special needs
Published: Friday, June 17, 2011, 6:22 PM
By DAVID WENNER, The Patriot-News

Dr. Dennis Charlton, Pennsylvania Dental Association president, speaks at a gathering of PDA members at the Capitol Rotunda on June 14. 06/14/2011 DAN GLEITER, The Patriot-News
Autism can cause a mouthful of pain, and worse. That’s why Pennsylvania dentists want a state mandate to require health insurers to pay for general anesthesia for patients with mental disabilities that prevent them from tolerating dental work while awake.
The mandate is contained in a bill sponsored by state Rep. Stan Saylor, R-York.
It would apply to all children 7 or younger, and to older people with conditions, such as autism, Down syndrome or developmental disability, who otherwise wouldn’t be able to undergo dental work.
One advocate for such patients is Dr. Bill Spruill, a Carlisle dentist. Spruill is a former president of the Pennsylvania Dental Association, which has pushed for the mandate for years. “This is a small group of patients, with critical needs, who can’t be treated in a regular dental setting,” he said.
Without it, it’s impossible for them to undergo dental work or, for some, to even receive preventive care such as an exam and cleaning. Typically, these patients experience fear, extreme anxiety or agitation that can’t be overcome with standard pain- or anxiety-control measures available to dentists.
Spruill argues that denial of anesthesia, which can cost from $500 in an outpatient facility to $3,000 in a hospital, amounts of denial of medial care, since many patients can’t afford to pay for anesthesia on their own, and thus go without the dental care.
Spruill said that, in 31 years as a dentist, a health insurer has rarely, if ever, paid for general anesthesia for one of his patients.
However, the medical director for a local health insurer, Highmark Blue Shield, said Highmark does pay for general anesthesia for some dental patients.
Those include patients with disabilities that warrant them being under general anesthesia for the dental work, as well as others with extreme anxiety or sensitivity to pain, or dementia, said Dr. Andrew Bloschichak, the senior medical director for Highmark.
He said Highmark pays for general anesthesia when it’s deemed medically necessary. But it has “no blanket policy” regarding the coverage, he said."

Supporting Social Connections for Adults with Developmental Disabilities

I just read this story about an organization in Georgia, and I am wondering if a similar program exists in the D.C. area. It would be wonderful if it did! This is how people become a part of the communities that they live in and have full and meaningful lives. Please post a comment if you know of something similar to this:

The original story was found at http://www.gwinnettdailypost.com


Hope on the Horizon
Hi-Hope Service Center provides vital support to individuals, their families and the surrounding community.
Posted: 11:03 AM Jun 15, 2011
Reporter: By Susan Boland Butts


Story 0 Comments
Font Size:
Hi-Hope Service Center provides vital support to individuals, their families and the surrounding community. Hi-Hope’s mission is to support adults with disabilities by building and sustaining individual independence. Supporting adults to build social connections is an important key to increasing individual independence. Thanks to the investment of volunteers there is hope on the horizon for many adults with developmental disabilities.

Here are just a few of the volunteers who are assisting adults with developmental disabilities in building social connections.


Hiroko Nishiguchi volunteers at Hi-Hope on a regular basis in Hi-Hope’s art shop. Using her creative skills and whatever unique, and often leftover, supplies might be available she educates adults on shapes, colors, and structure. Some amazing sculptures have resulted. Claude Waters cleaned out his garage and came to Hi-Hope with armfuls of beautiful silk flowers. He spent two hours exposing individuals to the art of flower arranging. Linn Honeycutt comes weekly to Hi-Hope and accompanies a group of individuals as they deliver Meals on Wheels. His engagement allows them to experience the joy of regular volunteering.

Hi-Hope’s weekday program and residential programs are places where individuals are educated about social connections that may be of interest to them. We have opportunities to educate individuals about a variety of topics which support their identification of activities that are important to them. For example, physical fitness, cooking, gardening, literacy, history, volunteering, arts and crafts, recreational games and music are topical areas of interest. Could you share your knowledge and experiences about one of these or another area that is important to you? If so, you just might spark an interest and make a friend.

Once a potential area of interest is identified, we seek to expose individuals to those activities so they can decide if they enjoy spending time in that pursuit. That may happen on our site, or in a community setting which would support brief opportunities for an individual to see what it is like to actually do that particular activity. Could you introduce an individual to your hobby? Show them how to engage in what is so important to you? If so, you just might broaden their life experiences and deepen a friendship.

Once an individual has been exposed to an activity, they decide whether they would like to experience that activity on an ongoing basis. Social connection experiences are best when an individual is included in opportunities in integrated community settings. Would your group, club, class, or family welcome an adult with a developmental disability who shares your interest? If so, you just might find even more meaning in your activity and make a lasting friendship.

If you are interested in sharing your knowledge, skills or connections with an adult with a developmental disability, please contact Hi-Hope at 770-963-8694 or go to www.hihopecenter.org. Hi-Hope Service Center – cultivating community and opportunity for adults with developmental disabilities — 50 years strong and growing.

Susan Boland Butts is executive director of the Hi-Hope Service Center.

Daily Occupational Therapy?

I would be happy to get one hour a week of OT for V, but finding and keeping an OT who will come to our home has been very difficult. We have only had 6 months of private OT in the past 3 years, and funding was not the problem. I was very happy to come across this resource that provides another way for family or caregivers to implement some of the same strategies to help V that an OT might if they were here.

So, I have copied this review of the product from "Our Journey Thru Autism" Website:

OT in the Home, A Review of an Excellent Resource for Implementing Occupational Therapy at Home
5:11 AM Posted by Martianne


by Martianne Stanger

When you look at a title of a video and it refers to occupational therapy (OT) in the home, you expect a lot. For example:

host of activities to demonstrate how to approach OT at home in between regularly scheduled sessions with an occupational therapist
ideas for helping children regulate their senses while moving through typical activities of daily living (ADL's), such as eating, dressing, bathing, brushing teeth and bedtime
a key to understanding your child’s needs through professional perspective translated into layman’s terms that any caregiver can understand and act upon
an easy-to-watch resource that can hold your interest when viewing it in its entirety as well as be accessed in small chunks, to be watched around a busy schedule
In the case of the 90-minute video, OT in the Home with Occupational Therapist Britt Collins, M.S. OTR/L, you get all this and more.

Activities a Caregiver Can Facilitate
Due to scheduling conflicts, finances and other hurdles, many children are only able to see a licensed occupational therapist periodically. That leaves their caregivers to do OT with them in between. OT in the Home can help with this. It offers a wide variety of ideas that can act as bridge between appointments. Throughout the video, activities and strategies are discussed and modeled. These include ones that key into:

fine motor skills
gross motor skills
sensory regulation, and
organization of behavior.
Both as a parent teaching my children to write and as a tutor who helps many children that have difficulty with handwriting, I found two strategies presented by Britt particularly interesting:

Highlight a portion of each space on lined paper to give children a concrete visual to focus on when placing their lower case letters.
Use a slant board to help children with visual perceptual issues and those that need to strengthen upper extremities and hands.
Since implementing these strategies, I have already seen progress in the children I work with.

Strategies for Every Day Life
Most families cannot access support of an in-person occupational therapist on a daily basis, but any family viewing OT in the Home can benefit from the expertise of a team of them:

Britt Collins (M.S. OTR/L)
Dr. Angela N. Hissong (OTR/L,CAPS)
Dr. Kari Thompson (OTD, OTR/L, BCP, SWC, CLE, IMC,CID Doctor of Occupational Therapy, AOTA Board Certified in Pediatrics, Sensory Integration Certified, Advanced Practice Certification in Swallowing, Certified Lactation Educator, Certified Interior Decorator)
Jamie Bergstein (OTR/L specializing in Pediatric Water Therapy)
Lindsey Biel (M.A. OTR/L and co-author of "Raising A Sensory Smart Child"
This phenomenal team worked together on OT in the Home to provide caretakers with practical strategies and solutions for everyday challenges that they may face with their children.

Some that I found helpful were:

the concept of using gentle physical prompts instead of a lot of verbal ones when moving children through morning routines. Sometimes asking, “What are you going to do next?” is difficult for children to process and a physical prompt or visual cue can be more effective. Since consciously employing this strategy with my own child, I have been seeing better response times and independence when moving through routines.
drinking a thick shake or applesauce to organize oneself in the morning. I had heard and read many times that drinking through a straw can be good for oral motor development, but because my child does not have many oral-motor issues, I had ignored the activity. Upon watching Britt work with the children in the video using this technique, I realized how beneficial this activity can be toward helping any child through transitions, calming and organizing them
the reminder not to draw attention to challenging behavior as it might reinforce it. Brit consistently modeled how to move through an activity, redirecting as appropriate without reinforcing undesirable .

Accessible
OT in the Home is a well-organized resource that allows viewers to access a wide variety of strategies in an easy-to-watch format. Activities are divided into chapters which include types of skills (i.e. fine and gross) and time frames within the day (morning, homework time, bedtime, etc.). This allows viewers to view what they need when they have time to do so.

There is also a lengthy segment on aquatic OT, which made me want to run and sign up for a membership at our local pool, and a brief, but inspiring, segment on designing a sensory-friendly play space for children, which has me sketching and dreaming.

In all the chapters of OT in the Home, I found these elements extra-helpful:

The why behind the what of activities is given. For example, why would one want to toss a bunch of balls into a body sock with a child?
Activities are done with real kids, not actors or models. This made me nod in recognition at times, thinking, “My kid does that, too!” It also adds authenticity and allows viewers to witness how Britt works with a variety of children, providing a wide array of examples of how to provide clear direction, encouragement and fun and calm, firm responses as needed.
Solutions are given for adapting typical OT gym activities to home. For example, there is a good section on obstacle courses with suggestions for materials that can be used at home to create one.
All of the explanations on the video are both real and articulate. When specific occupational therapy terms are used, they are explained in a way that anyone can understand them.

So What’s Not to Like?
There is very little not to like about OT in the Home. In fact, after watching the video for the first time, my only wish was that that I had my remote control with a pause button in one hand and a pen in the other while viewing it, so I could have taken notes on the plethora of useful ideas, activities and information presented in the video.

Upon further viewing (this time, in segments, with pen in hand!), my only wish was “More!” Brit Collins and her colleagues did such a wonderful job presenting occupational therapy strategies in an understandable, practical format, which allowed me to begin using some strategies with my child immediately, that it left me wishing for a “part two” to access when we are ready for the next level.

While I know that working with a licensed occupational therapist in person is priceless, so is having a ready resource to turn to every step of the way when doing occupational therapy at home. OT in the Home is this resource. It is one that any caregiver can benefit from – one that should be in the hands of parents who need to do OT at home, caregivers wishing to explain OT to others and professionals seeking to share a useful tool with their clients.

I will be reading more posts at http://www.ourjourneythruautism.com and I hope you find something helpful there also.

Law Enforcement Training to Caregivers of Special Needs Clients

Kudos to Texas for taking the initiative to recognize the unique needs of citizens with developmental disabilities and for taking action to meet those needs!

Read about the Texas Tech training program in the story below that I copied from the Avalanche Journal.

Staying safe may be harder for disabled
Special considerations need to be made when crisis situations arise involving people with developmental disabilities to keep those individuals from becoming victims or to avert scenarios where the situation may turn even more harmful or even deadly.
Posted: June 14, 2011 - 10:44pm | Updated: June 14, 2011 - 11:03pm

Sergeant Eric Williams, of the Texas Tech Police Department, discusses the interaction between autistic individuals and law enforcement at High Point Village in Lubbock, Texas Tuesday, June14, 2011.
ADVERTISEMENT
By KIM LEHMAN
AVALANCHE-JOURNAL
Special considerations need to be made when crisis situations arise involving people with developmental disabilities to keep those individuals from becoming victims or to avert scenarios where the situation may turn even more harmful or even deadly.

That was the message Texas Tech Police Department officers presented Tuesday evening at High Point Village, 10911 Slide Road, to a group of caregivers of special needs people, and of critical importance as they pointed out people with developmental disabilities are seven times more likely to encounter law enforcement scenarios.

High Point Village is a faith-based organization providing motivational, educational and vocational activities for special needs people and their caregivers.

Sgt. Eric Williams with the Texas Tech Police Department and Officer John Poirier described the measures taken to educate officers and other responders
on learning to recognize and deal with special needs individuals.

The also presented information on how caregivers can assist first responders, such as police and firefighters, to quickly identify someone with special needs to avoid conflicts that may arise because of the person's disability.

Williams and Poirier focused on what they say is an underexposed area of concern - dealing with an active shooter situation, where an armed person enters a place and is intent on mass murder, and the scenario involves individuals in a group situation such as a home for the developmentally disabled.

Williams said the statewide initiative, Crisis Intervention Training, is mandatory for all officers to train them on how to recognize an individual with special needs and take the appropriate action in those cases.

They explained how individuals with special needs, particularly autism, may react with what others perceive as an inappropriate response to law enforcement or other first responders in some of these cases.

"Some of these individuals with autism have been injured or even killed in these circumstances," Williams said.

Some examples include a child with autism killed in a police shooting at a group home in Texas or another young boy with autism, who suffocated in Florida after he was restrained by officers.

Officers have learned to recognize these individuals may not make eye contact, may make repetitive movements, not be able to provide identification when asked and may not be able to speak or use sign language.

These officers have learned alternative practices for dealing appropriately in these situations.

Officers Williams and Poirier discussed the importance of parents and caregiver education and said caregivers can help special needs individuals learn to react calmer to crisis situations by explaining pictures of firemen and police officers, teaching them to dial 9-1-1, inviting local police to community events to interact, and contacting their local police departments to help identify their special needs family members.

Caregivers were also encouraged to use identification programs, such as medical bracelets and state-issued ID cards through their local Department of Motor Vehicles or sew labels containing vital information into the person's clothing.

Another focus of the evening was training caregivers on responding in an active shooter situation.

"A special needs child will be completely overwhelmed, emotionally, physically and psychologically, and it is up to you, as a caregiver to help them so they will not become a victim," Williams said. "You, as a caregiver must act with violent determination to save these kids. When I say violent determination, I mean you must fight like you never have before."

He explained you must get out, hide out or take out the shooter.

If you cannot get out, then try to hide somewhere like an office or classroom, barricade the door with as many heavy items as possible and extinguish all lights and any other devices, like cell phones.

Only when you have reached safety or are hiding, call 9-1-1.

The last line of defense, Williams said, is to take out the shooter.

"Fight like your kids' lives depend on it, because they do," he said.

Williams told the group he did not want to scare anyone make them aware of the need to be prepared in such situations.

"We prepare our kids with fire drills and tornadoes and other things, we must also prepare them for an active shooter situation by using drills as well," he said.

Other tips were to have first aid training and a high quality first aid kit.

Doug Morris, executive director at High Point Village, said the meeting was designed to teach people in the special needs community to avoid being afraid of law enforcement and to show caregivers and parents how to defuse a volatile situation.

James Aldridge, president of the board of directors for High Point Village, said "Parents don't always know how to teach their children how to react to first responders, and we need to give that to them to help prepare them before a crisis situation happens."

To comment on this story:

kim.lehman@lubbockonline.com • 766-2155

shelly.gonzales@lubbockonline.com • 766-8747

Other tips

■ Download an emergency contact form from www.autismriskmanagement.com and fill it out and put it in your child's backpack, or tape it on your booster seat and distribute it to family and friends.

■ Register with Project Lifesaver at www.projectlifesaver.org for immediate GPS assistance with lost individuals.

■ Obtain a state-issued ID from the Texas Department of Motor Vehicles at www.dmv.org.

Comment

Working on the Safety of Developmentally Disabled Citizens

I am glad to hear that someone is talking about the problem of abuse of the disabled and the concealment of it. New York appears to have a long way to go to improve the situation, but are at least making an effort.

To read the article in the New York Times, you can copy and paste this URL, or you can read the article that I have copied below.
http://www.nytimes.com/2011/06/14/nyregion/gains-seen-in-reporting-abuse-at-new-york-group-homes.html?_r=1

ALBANY — Roughly 40 percent of the allegations of physical abuse of the developmentally disabled at group homes and institutions in New York in recent months were not reported to law enforcement authorities, a senior state official said on Monday.
Related

A Disabled Boy’s Death, and a System in Disarray (June 6, 2011)
INTERACTIVE FEATURE: Abused and Used
Enlarge This Image

Nathaniel Brooks for The New York Times
Michael Carey appeared with a picture of his son Jonathan, who was killed in 2007 while in the care of state workers.
The official, Courtney Burke, the new commissioner of the Office for People With Developmental Disabilities, revealed that figure as the Cuomo administration laid out initial steps that it said it was taking to reform the state’s care of the disabled.

Ms. Burke and another administration official testified at a State Assembly hearing that underscored the steep challenges facing efforts to improve the system.

Ms. Burke said she had put in place a number of measures to raise hiring standards and improve the reporting of abuse. Among them, she said she had ordered employees to notify law enforcement officials of episodes of physical and sexual abuse that might be a crime. Her order is a sign of the agency’s problems, because notification is already required by law.

Ms. Burke said that since she took over the agency in March, about 60 percent of the allegations of physical abuse were reported to law enforcement, up from about 17 percent before her tenure began.

Nearly 88 percent of allegations of sexual abuse were reported, up from about 75 percent, she said.

While those figures represent progress, they suggest that there are hundreds of serious allegations that are still not being reported. And Ms. Burke said her agency was still reviewing reporting mechanisms to see if the numbers were accurate.

Ms. Burke also proposed legislation that would bar the agency from hiring people convicted of violent crimes or sex offenses; it would not prohibit employing other convicted felons. The bill would make it clear that an individual with a developmental disability receiving state services could not legally consent to sexual contact with a staff member; the measure is aimed at curbing sexual assaults.

In her testimony, Ms. Burke did not directly address what many critics see as one of the agency’s serious problems, its lack of transparency. The agency often cites state privacy laws for refusing to release even redacted copies of reports of abuse.

“My top priority has been the health and safety of people with developmental disabilities in our care,” Ms. Burke said in her opening statement. “Change does not come easily, but I want to make it clear to you that I am changing things quickly and significantly.”

The hearing was the latest of four led by Assemblyman Félix W. Ortiz, a Brooklyn Democrat, prompted by a recent series of articles in The New York Times detailing lapses in the state’s care of the developmentally disabled. Among the findings: The state has retained workers who committed physical or sexual abuse, rehired many workers it had fired, shunned whistle-blowers and rarely reported allegations of abuse to law enforcement.

Assembly members also heard testimony from Roger Bearden, the new chief of the Commission on Quality of Care, a state agency that is supposed to monitor how Ms. Burke’s agency and others do their jobs.

Mr. Bearden, however, struggled to explain the commission’s role.

“The commission has a simple mission, to protect and advocate for persons with disabilities,” he told the lawmakers.

The commission investigates only a limited number of abuse allegations and has no enforcement powers, leaving the Office for People With Developmental Disabilities largely to police its own staff. The commission’s mission statement, Mr. Bearden said, is “under review.”

Assemblyman Thomas J. Abinanti, a Westchester County Democrat, said, “I don’t really understand what your commission is supposed to be doing, and what I’m hearing from you is that your commission doesn’t really seem to know what it’s supposed to be doing.”

In recent years, the commission has produced few reports and taken pains to stay out of public view. The Times reported in March that aides said Mr. Bearden’s predecessor, Jane G. Lynch, never talked to the press in nearly three years on the job.

“The key for us as a commission,” Mr. Bearden said, “is that we have not had, quite honestly, much of a public presence or face, and I am striving to change that.”

Mr. Abinanti expressed a widely held concern over the state’s overlapping oversight structures. State group homes and institutions are monitored to varying degrees by the Health Department, the Office for People With Developmental Disabilities, the Commission on Quality of Care and federal regulators, among others.

“Sounds like everybody is overseeing everyone else, and everyone is overlooking the problems,” Mr. Abinanti said.

A version of this article appeared in print on June 14, 2011, on page A17 of the New York edition with the headline: Progress Claimed in Reporting Abuse at Group Homes.

Disabilities: Do They All Need Fixing?

Professor Paul Steven Miller was a lawyer, professor of law and an advocate for the disabled. He died in October 2011. Professor Miller also had a condition of dwarfism and suffered discrimination in the workplace. His New York Times obituary said,
"Drew Hansen, an adjunct lecturer who taught with Mr. Miller, said his colleague had long been concerned about the carrying out of the 1990 Americans With Disabilities Act. “He believed that judicial interpretations of the A.D.A. were more restrictive than they had been of civil rights laws because there was not a similarly visible mass social movement,” Mr. Hansen said."

Professor Miller felt, as many do, that it is not always in the best interest of disabled people to correct the genetic differences that result in their particular disability. In a presentation at Georgia State University he had this to say:

"Professor Paul Steven Miller Speaker Program on Avoiding Genetic Genocide
February 28, 2008

"Good Intentions and Eugenics: Avoiding Genetic Genocide"
Event details
Audio recording of this event

Professor Paul Steven Miller spoke on "Good Intentions and Eugenics: Avoiding Genetic Genocide" to a packed room of over 150 people in February 2008. Professor Miller has devoted his professional career to fighting discrimination against those with disabilities.

Professor Miller's impressive resume includes roles as the White House liaison to the disability community, President of Little People of America, and one of the longest-serving commissioners of the U.S. Equal Employment Opportunity Commission. Exploring the relationship between the medical and disability communities, he explained that although everyone wants to do what is in the best interest of disabled individuals, what actually is "best" is often understood quite differently by physicians, health care researchers, and people with disabilities.

Professor Miller observed that there are two frameworks used to understand disability: the medical model and the social/civil rights model. The medical model reflects the dominant societal view that illness and disability need medical solutions so that the ill or disabled person can fit into mainstream society. Alternatively, the social model strives to change society to embrace the disabled person as she or he is.

Professor Miller noted that "the advent of genetic technology has a tendency to pull the focus of disability further into the medical-model realm" and that "the disability community is concerned that genetics as currently defined, practiced, and presented to the public reinforces the stigma of disabled individuals as defective individuals." Commenting on the need for the medical and disability communities to understand each other's histories, he also explained:

"The history and social context of the eugenics movement informs how people with disabilities currently view genetic science and medical science as a whole. There is no question that the genetic revolution holds great promise and that today's doctors and researchers have good intentions and want to improve human health for all. But because of the complex historical and cultural context associated with the science of genetics, the medical and disability communities have a difficult time understanding each other."

The lecture was followed by an in-depth question and answer session and a reception where audience members could meet and talk further with Professor Miller."

Many high-functioning autistic people have argued that they do not want or need to be "fixed". They prefer acceptance.

When a person is able to function independently, support themselves financially, and have meaningful and lasting relationships, I see the point. Perhaps they feel that their disability is a part of their identity and that they would not be the same person without it.

However, when a disability results in substantial dependence on family or society for support, physically and financially, when an individual can not express their needs or desires, when their opportunities to enjoy education, work, friendships, family and freedom are substantially limited compared with non-disabled peers, then genetic solutions will be a blessing. Those who want and need a "fix" should have it. Those who feel their lives are fine without a fix, should be accepted as they are.

What do you think?