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Archive for July, 2012

Happy Birthday ADA| 22 Years of Progress

Signing of ADA

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Happy Birthday ADA

Representative Tony Coelho shares the reasons he introduced The Americans With Disabilities Act in Congress in the late 80s. Tony Coelho also is a strong supporter of Partners in Policymaking.

Tony Coelho had epilepsy and used his life experiences to make a difference for thousands of people with disabilities and their families, not only in the present, but in the future.

What Can I Do?

When I get discouraged and can’t solve basic day to day problems for Aaron, my son with autism, I try to look at the big picture.

ADA is only 22 years old. Think about it.

The US Constitution is over 200 years old and we still have lots of issues to resolve. 22 years is just infancy in the lifespan of the ADA civil rights legislation. So we have made progress, but there is still lots to do.

After my recent surgery I went to our local community center and joined the seniors swim hour. I was shocked to see that there was no railing going down into the pool. Since I was wobbly and certainly didn’t want to fall again, I needed a railing.

I watched the other seniors (many of whom were also wobbly) hold on a low wall and scoot as best they could to enter the water. I saw one gentleman almost fall.

Now, this was my first day in the community center. I went there to try and get healthy. Meet some new friends; distance myself from “disability world.”

I noticed the pool had a lift for people who needed it. The pool also had a large zero grade entrance where a person could just walk into the water without any steps. This insured no steps, but didn’t solve the problem for someone who needed a railing. They did have a three step entrance on the other side of the pool that had a railing.

Technically, this pool met ADA requirements.

But all the seniors using the pool climbed down off this low wall and were in danger of falling.

When I asked the head life guard about it, she just shook her head and said, “I agree it is a problem, but no one listens to me.” She suggested I could take my walker into the pool if I wanted, or she could hold my arm and assist me.

I looked at my walker and it was aluminum, but it had holes where you could adjust for height and the water would surely get in there. I could just picture my walker dripping water all through my house—so the walker in water solution wasn’t going to work.

I already felt self-conscious enough, new kid and all, so I really didn’t want a life-guard escorting me into the water.

We solved the problem by having one of the other seniors get into the pool and helping me with that first step. Then I was fine.

Fine, except I now had an 80 year old woman who weighed 100 pounds wet, helping me get into the pool. If either one of us had fallen, I would have squashed her like a waterbug. To say nothing to what this did to my self-esteem and confidence.

As I joined the flow of seniors exercising in the water current, I tried to ignore the whole thing and kept telling myself: “Boundaries Mary!” “Choose your battles.” “Can’t you be normal for once?”

I wanted to be “included” I wanted to belong. I didn’t want to start off causing trouble.

I almost had myself convinced until I had to get out of the pool–Then my advocacy voice started again.

I followed the other seniors out of the water as we all tried to maneuver the low wall and the big step.

And, then you know what happened. I pulled the ADA trump card.

ADA makes a Difference, but only if you use it.

I ask to see the ADA Compliance Officer to file a complaint. The Community Center Director immediately met with me and gave me an official form.

She sincerely said she didn’t know this was an issue and thought the pool met all the requirements. She said she would look into the issues I raised.

I asked if there was an alternative to filing an official complaint. She said they had a form for suggestions and concerns, so I gave her back the ADA complaint form and wrote a long description of the problem.

I figured, as long as I solved the problem, this saved her a lot of paperwork and bought me goodwill.

The Director took the issues seriously. She asked me, “What do you think will solve the problem?”

I suggested she talk with other seniors, the Life Guards, the OT and PT department which uses the pool for their clients (me included). I suggested she watch the arrival and departure of the seniors (basically an ecological assessment). I also suggested she look into the concept of Universal Design.

Good News

The Director did her job and I didn’t need to use ADA.

Wait, let me reword that. I used ADA (even if it was just the threat of a compliance violation and paperwork headache.)

The new accessible pool entrance designed by the lifeguards and PT department will be installed in August. Already they have put no-slip mats in the changing areas and installed automatic doors. I feel really good about this. My advocacy worked and made a difference.

ALSO,

When I got the Fall Community Center flyer, I noticed they have a new program to “include” kids in their day programs and camps. I had nothing to do with this, but someone did. Some advocate spoke up… now current and future children will have more opportunities for inclusion.

I’m reminded of the old UP WITH PEOPLE song: “Freedom isn’t Free.” You have to pay a price, you have to sacrifice for your liberty.

Can you make a difference, too?

As we celebrate the anniversary of ADA. We are standing on the shoulders of those who came before us. Thank you, Tony Coelho. Thank you Justin Dart, Bob Williams and Ed Roberts and the thousands of others who worked so hard to give us a chance at a better life and future.

There are many people who don’t think we need government laws. When ADA passed in 1990, I was only worried about my son Aaron. But today, I am the one using the walker and needing accommodations. Now, I also need ADA.

What can you do?

In the comments can you share your ideas? Is there some way you can make life more accessible either as a professional or as an advocate? Anything that has worked? Not worked?

Keep Climbing:
All my best,

Mary

Related Posts

Happy 20th Birthday ADA

The Yet-to-Be Disabled

“Telling Your Story”| Free App for Advocates

Partners in Policymaking Class of 2012

The Minnesota Governor’s Council on Developmental Disabilities (MN DD Council) does remarkable work. On this blog, I often reference the Parallels in Time (history of people with disabilities) and their Partners in Policymaking Program.

This week MNDDC announced a new FREE app called “Telling Your Story.” Already it has being downloaded around the globe.

EVERYONE has a story.

EVERYONE wants to solve their problems.

EVERYONE wants to be heard.

BUT, SOME People need extra support, skills and confidence to tell others what they want and need.

“Telling Your Story” is for Everyone

Everyone knows personal stories are the most powerful way to influence policymakers and legistlaters. Stories make the rules, regulations and policies become real.

The new “Telling Your Story” app for IPads is an organizational tool to make it easier to tell those stories.

It was created to help adults with disabilities be an active part of the democratic process and find their voice, their confidence and then–their Policymaker.

The “Telling Your Story” App is easy to use and is written for self-advocates–but mom, dad, brothers, sisters, grandparents and allies can use the same template.

The simple format helps advocates compose and practice the personal story they’ll present to elected public officials or other policymakers at all levels of government.

Some of the self-advocates learned to use this app in the Partners in Policymaking Program.

The app guides users through the steps:

–introducing yourself

–identifying the specific issue

–presenting a compelling personal story in text

–creating an audio recording to practice and rehearse their story

–selecting a photo they may wish to include

Budget Cuts| It’s Personal

Here is an example of one self-advocate’s compelling story using the new app. She is explaining how a recent budget cut affects her life and will cost the state more in the long run.

This is MY STORY:

My name is Thea Graham. I live in your district. I have been waiting all year to come to the Capitol to meet with you. I want to tell you a little about myself.

Currently, I live with my mother. She is very good to me and I love her a lot. I do know that I will not always be able to live with my mom. We have been looking at different residential support options to see what would be the best match.

I know when I move out, I will need staff to support me in using my “wise mind” since I can get upset. Staff will also need to help me with making sure that I look nice since this is very important to me. They will also need to help me drive to the doctor and help me understand what the doctor is saying about my health needs. My mom does all of this for me now.

I receive services at Merrick, Inc., a day program in Vadnais Heights. It is here that I have learned to use my “wise mind” more and more. Before I would swear, yell, and hit people when I got mad—now I use my “wise mind”. This means that I “stop, calm down, think, and come up with another solution that will help resolve the situation”. I do the following jobs at Merrick: pick up plastic recycling at the Maplewood Mall, package medical supplies, take Styrofoam from Culligen caps, and shred pull tabs. I love to make money and work like everyone else does. My job coach Kathy and “Christian” support at my job and they tell me I am doing a good job not only with jobs but how I handle things that come my way. Another thing that I like about Merrick is that I have learned to speak up for myself—doing so assertively not aggressively. Above is a picture of me running for office at a Wednesday morning self-advocacy group meeting. One of my role models is Rosa Parks and the difference she made on the lives of others. On Martin Luther King Day, I have been Rosa Parks showing her role in the bus boycott play. It makes me feel proud to be “Rosa Parks”.

I feel that I have come a long way since coming to Merrick over 13 years ago. However, my CSSA funding for Merrick was significantly cut as of January 1st.

Instead of receiving services for 5 days per week, I only have funding for 2 days. This is a huge burden on my elderly mother who now is taking care of me the 3 days I am not able to attend Merrick, Inc. My mother is not in good health and I am worried about her.

If I am sitting at home alone, I am not making money. I am not at my job where I am relied on to do my work. I am not continuing to build on my skills to cope with being frustrated and angry.

Please hear my story and know that I can’t sit at home. If I end up in crisis, it would cost the state a whole lot more than it would be maintaining my day program services. It is the proactive thing to do—it is the right thing to do.

Download Free App for IPad Here

Click Here for free “Telling Your Story” App. for IPad 2 or newer

Click Here for more information on the “Partners in Policymaking” Homepage.

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How can Professionals Use this App?

Many children and adults with disabilities and their families are going to need technical and emotional support for using this app.

Some will not have an IPad available. Some will need coaching or help in transcribing their words onto paper. Some will need encouragement to overcome fears and answer questions.

Transition and High School Teachers:

There could be all kinds of uses for this app. especially in a Problems of Democracy class or in any advocacy or problem solving situation. I would think the format could be adapted for completing many general education projects and assignments. This could also be part of Transition or Speech Language Communication session (social stories?). Learning to use this technology and format would make an excellent IEP/ITP goal.

University Professors:

University students in Introductory to Special Education or Geriatrics, Disability Studies, social work, legal or medical professions could use this app to interview and help support a person who struggles in Making Your Case and get their thoughts organized. This app could create cooperative learning and inclusion opportunities.

This would also be a great project for a Special Olympics Buddies, SCEC or Service Learning.

There could be research potential for all majors. Does this app empower and support vulnerable people? Does this make a difference?….

Self-Advocacy Groups:

This is a gold-mine for empowerment, self-determination, voting, citizenship and lessons on democracy. Veterans and senior citizen groups might also be interested in grants or projects for their own members.

Direct Care Workers:

I can see this being used at places of employment and leisure/recreation to help people tell their wants, needs, likes and dislikes and get a better quality of life.

What do you think?

Will this app “Telling Your Story” help children and adults with disabilities tell their own stories? Would this app make it easier for someone you care about? Do you think it is important that policymakers like school board members, county, state and national legislators hear from the people in their own voices? Tell me, will you download this app and use it?

Keep Climbing: Onward and Upward

All my best,

Mary

Related Posts:

Partners in Policymaking| 25 Years in Making the Government Work

Autism| A lot more needed than awareness

Remarkable Parents and Advocates who never give up

Communication| “A Lottery Winner in Life”

The Case of the Bleeding Pork Chop

The Case of the Bleeding Pork Chop

This week I received an “incident report” from my son’s adult day program–they are the ones who take care of Aaron from 9-4 each day.

The residential staff, who prepared Aaron’s lunch, were written up for: “safety issue—undercooked pork leftovers in lunch.”

The report read:

“For the second day in a row, Aaron was sent in with pieces of pork chops that were undercooked. The insides were pink and bleeding.

Pork must be cooked all the way through or it can make you very ill. Our concern is that these are leftovers. So he was served this raw the first time.

We cooked the pork to completely done before serving it to Aaron to insure his health and safety.”

What to do?

Since Aaron is 37 years old, as his parents and guardians, over the years we have had scores of “incident reports” since he moved into a supported living home with another young man. So, no panic–but certainly there is concern. Aaron has autism and can’t speak for himself, he is totally dependent on others.

The day care staff solved the immediate health and safety issue. Thankfully, they took the extra time to cook the pork chop for Aaron’s lunch and he didn’t go hungry or get sick.

Now, the issue becomes one of communication and prevention.

How can we get everyone to work together so this and other safety and health issues don’t happen again?

Calling in the Team: Making the System Work

I called our case manager and asked her to set up a meeting to talk about pork chops, transportation, personal care and communication. The pork chop “unusual incident report” is just one of several items of concern: late arrivals, communication charts not filled out….

No one wants to go to meetings, no one wants confrontation–and everyone seems to want to point fingers.

Safety is More than Just about Cooking

It used to be illegal for one company to provide the house that Aaron rented, the residential support staff that took care of him from 4PM to 9AM and the day program staff who support him from 9AM to 4PM.

Because of current “anti-government” feelings, those restrictions were changed. Now one company can have the contracts on all three services: rent, residential and day care services–Sort of like the institutional model of old.

Fortunately, Aaron has three different companies and I think this gives him a better system of checks and balances and the day program could report the residential company and vice versa. Aaron can’t be dismissed or forced to move out if the only company decides there is a problem or the parents ask too many questions.

The real health and safety issue in this story is that Aaron, and other vulnerable people, need caring professionals who are willing to advocate for him and file incident reports and communicate problems.

Separate companies make this more feasible.

The real bleeding only happens when professionals keep quiet and don’t report problems and help make the system work.

HOLIDAY BONUS for Independence Day

Check out Mike Korins singing “Up to the Mountain” (a Martin Luther King song). He is an 18 year old man with the label of autism.

I agree with him that this song could also describe those of us living in a segregated and “special” Disability World who want to find an inclusive free world and go “Up to the Mountain.”

P.S. Yes, some people with autism can not only talk, they can sing!

Up To The Mountain (MLK Song) Lyrics

I went up to the mountain
Because you asked me to
Up over the clouds
To where the sky was blue
I could see all around me
Everywhere
I could see all around me
Everywhere

Sometimes I feel like
I’ve never been nothing but tired
And I’ll be walking
Till the day I expire
Sometimes I lay down
No more can I do
But then I go on again
Because you ask me to

Some days I look down
Afraid I will fall
And though the sun shines
I see nothing at all
Then I hear your sweet voice, oh
Oh, come and then go, come and then go
Telling me softly
You love me so

The peaceful valley
Just over the mountain
The peaceful valley
Few come to know
I may never get there
Ever in this lifetime
But sooner or later
It’s there I will go
Sooner or later
It’s there I will go

Share your thoughts:

Do you have any similiar stories? Isn’t Mike Korins terrific? Do you think there are adequate checks and balances? Should one company be allowed to do all three services (rent, residential and day supports)?

Keep Climbing: Onward and Upward
All my best,

Mary

Related Posts:

America the Beautiful| Through the Autism Family Car Window

Partners in Policymaking| 25 years of Making our Government Work