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Posts Tagged ‘citizen advocacy’

Dental Visits| Saying AHHHHHH

Say AHHHH

When Aaron was in high school he needed to get his wisdom teeth pulled. Sounds normal, right? You, me and most people get our wisdom teeth pulled.

The difference between you, me, most people and Aaron is Aaron has autism. That makes a huge difference in the choice of dentists, hygienists, insurance…pain, suffering and good oral hygiene.

Over the years, Aaron has had some great dentists and some not-so-great. Some great hygienists and…hygienists who refused to put their fingers in his mouth. One dentist wouldn’t let Aaron in his waiting room. I’ve written about the retarded teeth” episode.

Like most people I asked my friends for recommendations and was directed to Dr. G. for the wisdom teeth. We stuck.

Fifteen years later Aaron is still going to Dr. G., even though he is a pediatric dentist. The advantage of a pediatric dentist is he does not rely on the patient for any information and works quickly. Dentists and Doctors who work with adults usually ask their patients if they are having any trouble and expect them to participate in examinations. Young children and people with disabilities who don’t use words are a lot alike.

Normalization–Yes; Age-appropriate–No.

Dr. G has a “normal” practice. He works with lots of children and a handful of people with disabilities. While this meets the definition of “normalization” or “social role valorization,” this would not meet the definition of age-appropriate–Aaron is 36 years old.

How the Doctor Visit Works

Last week Aaron had his bi-yearly visit for a check-up and cleaning. Tom, my husband, takes Aaron (I’m too squeamish).

We have learned the best time for an appointment is the last appointment before lunch. This way, there are only a handful of other patients, the waiting room is less chaotic, and if Aaron runs over, there is some flexibility. We also schedule a day when Kathy, the dental hygienist, is working.

Full Circle

Kathy has worked with Aaron for many years but this year, a new hygienist was assisting her. Turns out this new hygienist was one of Dr. G and Kathy’s former patients. She grew up watching Dr. G and Kathy, became a dental assistant and now is working in their office. Full Circle.

Inclusive Dental Care | Autistic Dental Care–NOT!

Kathy used the same techniques she uses with all her patients. The trick is she individualizes the care based on the individual needs of the patient.

Individualized Dental Plan

As Kathy worked she explained what she was doing to Aaron, Tom, and the new assistant—between verses of camp songs! So, “I’m using these cotton squares to absorb the fluid so Aaron doesn’t swallow and gag…Eeeeye, eeeeye, Ohhh. And on his farm he had a cow…”

Kathy and everyone in the office, including the other hygienists, the patients and their parents all sing during the dental cleanings. She’ll be comin’ round the mountain, Wheels on the bus, If you’re happy and you know it…

Aaron loves it. This helps him relax, plus it builds a community among all the people in the room.

This isn’t the dreaded trip to the dentist I had when I was a kid, this is just a trip to the dentist with some fun people. And, the most interesting thing is ALL the other kids and parents love it too. Aaron often makes strange noises, somehow having a familiar song and such an accepting environment makes everything okay.

The amazing results are Kathy gets Aaron’s teeth cleaned thoroughly, she even flosses his teeth.

This is ASTOUNDING!

If you polled a group of 50 school psychologists 100% of them would say flossing Aaron’s teeth was impossible. You see this would NOT fit in any scientific venue. There would not be a big enough sample of patients, there would not be replication or any guarantee this would work in other dental offices. There would not be a lot of people just like Aaron, or like Kathy or Dr. G.. So, scientific methods are not applicable, this is not predictable. It just works.

Other tricks we learned from Dr. G, Kathy and the other people in the dentist’s office:

1. Use a sealer on the teeth. Aaron got his first sealant applied when they first came out over 15 years ago. The sealant has held up. Aaron has had no cavities in all that time.

2. Aaron goes into the hospital and Dr. G does a deep cleaning when needed. In 15 years, Aaron has had this procedure two times. It requires him to be put under, so it is serious.

3. Dr. G especially looks for gum disease at each visit.

4. He does not recommend an electric toothbrush for Aaron.

5. He does give a report card to Aaron on his dental hygiene.

6. We take this report card to Aaron’s ISP meeting and incorporate the teeth brushing into Aaron’s goals. Now, we know Aaron doesn’t brush his teeth—so this is mainly for the staff. But by incorporating it into the record keeping, there is some accountability for staff.

7. I’m sure Kathy and the others have all kinds of technical hints i.e. Because of Aaron’s balance issues, they adjust the chair for Aaron’s comfort—rather than theirs….

Dr. G.

As far as we know, Dr. G does not get paid for working with Aaron. We give the office staff Aaron’s medical card, but Dr. G has shared it is not worth his time to file the paperwork.

Kathy and the other hygienists always tell us it is their pleasure to work with Aaron. And they make us believe it. They make us feel Aaron is an important member of their caring community.

They make us feel welcome. We feel no one could pay them for the love and extra attention they give to Aaron. It is a special gift indeed.

I think they use Aaron to train their staff. Who knows whether that new hygienist may one day be doing Aaron or someone else’s teeth? I like to think Aaron is teaching them? Maybe they think, my god, if we can floss Aaron’s teeth—we can do anyone! Or, maybe it is a point of pride that they are damn good hygienists!

I think it is because they are just good people who care about other people. They are good hygienists with everyone–not just Aaron.

In return, as Aaron’s parents we cherish them and their gift.

State Cutbacks

When the state was going to reduce the dental visits from 2 times a year to once a year for people on medical cards, I wrote a letter to the state and called Ohio Legal Rights. The state cut back, reinstated, and then I think the current status is cut back again to one time a year.

Since Dr. G is so generous, we have had the luxury of taking Aaron twice a year. And we know we are blessed. Aaron has a great smile, his teeth and gums are healthy. We are lucky.

Tom and I also hassle the residential staff about brushing Aaron’s teeth. I’ve written before about how the caregivers don’t think this is necessary. So we make sure the staff knows this is a big deal and we will follow-through if Aaron’s teeth are not clean.

Every office visit, we also always bring all the dental staff flowers or a plant, we send thank you cards and tell them how wonderful they are. Kathy always gives Aaron a hug. And it always chokes us up.

Bill F.

Wolf Wolfensberger wrote an article about Bill F. I will never forget. Wolfensberger is a professor at Syracuse University who is famous for his theory of Normalization, Social Role Valorization and Citizen Advocacy.

In his article, Bill F. is a man with an intellectual disability who actually died because he was not given dentures that fit. This started a cycle of him not being about to eat well, manage his diabetes, which led to him becoming frail, which led to him falling, which meant he was put into a nursing home and lost his apartment and independence…. And died—all because he didn’t get the dental care he needed.

The other part of the Bill F story is about the role of advocates, friends, citizens who just cared about Bill and tried to get him help. These citizen advocates (here is an article from the MN Governor’s DD Planning Council site) gave Bill the dignity of being a friend and person. Not a client, not a patient, not a person with mental retardation who they were going to save or offer their charity. These citizen advocates cared about Bill the person.

I like to think Dr. G, Kathy and the other staff are not just doing their jobs when they treat Aaron. They have proven, time and again, they care about Aaron. He is more than just the patient in the 11:00 slot.

I think Aaron gives them something rare, something that makes them feel proud and humbled that they can be with him.

So, AHHHHHH indeed. Dr. G, Kathy and all people who work to give good dental care and sooo much more–Thanks We Love You. You make our mouths and hearts smile!

Keep Climbing: Onward and Upward

All my best,

Mary

Comments:

If you liked this post, please add your thoughts, share it on Twitter, Facebook… and other social media.
What do you think about the government cutting back dental services for people with disabilities? Does it make a difference if they only get their teeth cleaned once a year? Would they have extra reasons for needing check-ups twice a year? Is this discrimination? Are dental services for people with disabilities a waste of taxpayer dollars?

PS. You are allowed to disagree with me, a different viewpoint, helps us learn and find solutions.

Wolfensberger, W. (1989, December). Bill F.: Signs of the times read from the life of one mentally retarded man. Mental Retardation, 27(6), 369-373.

Unequal Justice | Bob Perske

In Bob Perske’s memory, I’m posting some of my favorite posts about him.

Bob Perske by Joe Arridy's Grave

Bob Perske by Joe Arridy's Grave

On January 7, 2011, Colorado Governor Bill Ritter, Jr. issued a “posthumous pardon” to Arridy, one of the five wrongly executed people with intellectual disabilities.

BOB PERSKE:

Pastor to People with Disabilities and their Families

Bob Perske is one of the most gentle and positive people I know. He lives God’s message to care for the “least of my brethern.”

It might surprise people to know Bob hangs out with criminals on death row.

In a previous post I shared his “history of people with disabilities and hope for families.”

Because Bob understands the history of people with disabilties, he knows FEAR was one of the main reasons for removing people from their families and locking them up in institutions, away from society. Fear is still one of the main reason people are excluded from quality lives in the community.

The world in which we live is not always safe, secure, and predictable. It does not always say “please” or “excuse me.” Everyday there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the real world. We must work to develop every human resource within us in order to prepare for these days (Robert Perske: “The Dignity of Risk.” 1972).

Bob is still hopeful for families, but he wanted to share his recent testimony about people with intellectual disabilities who have been convicted of serious crimes they didn’t commit. Crimes they confessed to because they wanted to make the police officers happy or get them to stop the interrogations. Crimes they didn’t even understand.

Everyone wants people who kill, steal and rape people behind bars. Everyone wants dangerous people off the streets. Everyone wants JUSTICE for the victims. And, Everyone wants the right person convicted.

But Bob Perske and others ask:

“What if the person who confesses to the crime is a person with an intellectual disability?”

Certainly, just because a person has the label of intellectual disability doesn’t make them innocent–but it also shouldn’t make them vulnerable to giving false testimony in our criminal justice system.

Bob writes:

Although I did a lot of writing about kids and families earlier, deep in my heart I think they also need to be aware of futures where they can be misunderstood by interrogators and they need to be alert and ready for these grim possibilities.

Unequal Justice by Bob Perske

Deadly Innocence by Bob Perske

What can we do?

ELECTRONIC RECORDING OF CUSTODIAL INTERROGATIONS
Robert Perske, Citizen Advocate
Persons With Intellectual Disabilities

Rperske@aol.com; www.robertperske.com
www.friendsofrichardlapointe.com
www.friendsofjoearridy.com

CT: REGARDING SB NO. 954 AN ACT CONCERNING THE ELECTRONIC RECORDING OF CUSTODIAL INTERROGATIONS (March 9, 2011)

Dear Committee Members:

For the past 34 years, I have served as a worker and author on cases involving persons with intellectual disabilities who were coerced into confessing to major felonies they did not commit.

I am a member of The ARC of Connecticut and The ARC of the United States.

I am the author of “Perske’s List: False Confessions from 75 Persons with Intellectual Disabilities.”

It will be published in September’s Intellectual and Developmental Disabilities, a journal of the American Association on Intellectual Disabilities. (AIIDD).

The article is 24 pages long. It shows that:

• 65 have been legally exonerated.
• 29 have been exonerated by DNA tests.
• 5 are now headed for court hearings thanks to “Innocent Project” groups.
• 5 have been so wrongly executed they will always be painful to justice-loving lawyers when they think about them.
• 1 of the five wrongly executed was Joe Arridy. On January 7, 2011, Colorado Governor Bill Ritter, Jr. issued a “posthumous pardon” to Arridy.
• I predict that Richard Lapointe of Connecticut will someday be added to this list.

The time has come when judges and juries should be helped by advanced video technology to see everything that went on in an interrogation room. Until they can do that, our justice system will be tainted.

Respectfully Submitted

Robert Perske

RESOURCES:

Check out Bob’s articles, books, websites or give him a call.

Closing Thoughts:

As parents we worry about our children being victims. Few of us imagine our children as the aggressor.

What can be done to give them better protection, a more fair and equal justice? Because sometimes even the people who have confessed to being the aggressors–are Victims.

Electronic equipment seems like an easy answer to me. I would think it would help protect the rights of everyone, including the police officers.

Keep Climbing: Onward and Upward
All my best,
Mary

Discussion: These are life and death issues. Would video technology and electronic recordings of custodial hearings bring better justice to everyone? Is this worth the cost? What do you think of Bob’s role as a pastor and “citizen advocate”? How can we make our children less vulnerable?

Bulletin Board| Stop the “R” word, Wolfensberger dies

READING THE NEWS in OLD CHINA --  Hats and Hairstyles of All Descriptions
Creative Commons License photo credit: Okinawa Soba

Bulletin Board

Today and Everyday is “Stop the ‘R’ word” Day.

Parents, Advocates and Schools around the country are joining in.

Many people are always complaining that the world is too complex –there is nothing they can do.

Stop the “R” word Challenge

YOU can make a difference by choosing respectful language in your own conversations. Doable, Yea!

If you have a story, please share it in the comments.

Here are the articles I have posted on this topic as well as some information on Rosa’s Law which was passed last year to take the words “retarded” out of all public documents. This is more than just being politically correct, it is a step toward seeing people with intellectual disabilities as being “human.”

Love-not labels| Rosa’s Law

Retarded No More

The “R” word| A Challenge to Bloggers

Definitions of the word “Retarded”

Building Community| Using People First Language

Wolf Wolfensberger

Father of Normalization and Citizen Advocacy

Wolf

Wolfensberger

 
 
 
 
 
 
 
 

On February 27, 2011 Wolf Wolfensberger died.

Since 1973, Dr. Wolfensberger had been a professor in the School of Education at Syracuse University. His enormous contributions to the disability community will be felt for generations to come.  
 
Dr. Wolfensberger was the originator of Social Role Valorization, the Normalization Principle as well as Citizen Advocacy: major concepts that strongly influenced disability policy and practice in the US and Canada.
 
He was widely recognized as a major contributor to the field of intellectual and developmental disabilities in the 20th century had a reputation for being a stirring and controversial speaker.
 
He was the author and co-author of more than 40 books and monographs, and more than 250 chapters and articles. His writing has been translated into 11 languages.
 
His best known books were: Changing Patterns in Residential Services for the Mentally Retarded, The Principle of Normalization, PASS, and PASSING (Evaluation tools for programs to meet the principles of Normalization).