Monday, October 26, 2009

The Disability Blog Carnivals are Baaaaack!

Disability Blog Carnivals are a collection of links to posts by various disability bloggers on a topic. Well, after a bit of a respite, a new one is up!

This one is on the topic of Disability and Work was put together by Liz Henry. Follow the links for some good, thought-provoking posts as the National Month on Disability Employment Awareness winds down.

Sunday, October 25, 2009

What Can We Do??

Governor Paterson suggests that the way to fix New York's financial woes is to cut funding to the OMRDD (developmental disabilities) and to the OMH (mental health) by 10%. When you take into the loss of matching funds this will add up to something like $375 million to the agencies that provide care and services throughout the state in this fiscal year...

As a solution our Republican legislators have proposed that NY cut Medicaid--victimizing the exact same population (with the addition of the elderly...)There is plenty of discretionary spending in the state, but THIS is where we begin.

I am disgusted.

I talked about why we'd advocate in my last post. Now, I want to talk about how:

1. Write letters, faxes, e-mails. The following is based on info was sent out by The Advocacy Center.

What is the best way to make contact?

By e-mail or fax (because of urgency) - or directly by telephone and in person.

Who do I contact? What if I do not know who they are?

Contact your personal State Senator and State Assemblyperson. You can go here and type in your zip code to get the names and contact information.

Are there others I should contact? Yes. You should also contact:

Senate Majority Leader Pedro Espada, Jr

Senate Minority Leader Dean Skelos

Assembly Speaker Sheldon Silver

Assembly Minority Leader – Brian Kolb

Diana Ritter, Commissioner of NYSOMRDD:

When should I do this? Best if before Wednesday, October 28, 2009

Guidelines for your Letter or Conversation

For Parents, Grandparents and other concerned family:

My name is_____________. My ________(child or other relationship to you of person with a disability) has __________.

For Self-Advocates:
My name is_____________. My disability is__________.

I have received (or my family has) ______________services (please list all examples if more than one) from_______________(names of agencies.) This has helped (me/my child/our family) in the following ways:_________________________(please be specific and name the direct impact it has had; for example – improved educational program, improved learning/grades, obtained employment, improved health obtained access to X,Y,or Z services, etc.).

Please do not cut OMRDD Family Support Services and Local Assistance funding. These services provide important support for children and adults with disabilities, and their families, including services like:

Whatever your family receives. Include things like:
Service coordination
Parent information and education
Professional and volunteer advocacy support to access complex systems of service
Family reimbursement to obtain otherwise unaffordable support

These services save New York State additional expense, by allowing people with disabilities to remain in their family homes or to live as independently as possible without reliance on more costly publicly-funded residential and day programs, and public benefits.

Thank you for your thoughtful consideration

Your signature and address (address is important so they know it is a valid letter).

2. On-line Advocacy:

If you prefer sending your correspondence on-line go here and fill out the form. You can personalize it with your own details--in fact, please do!

3. Go to your legislators' offices. In your home town, or in the capitol. Take pictures for your newsletter, your website, your Facebook page and for your suburban newspaper.

4. Go to the hearings. Rally. Gather (and remember uniting does not require uniformity--join cross-disability actions to be heard.) Invite the media.

5. Keep hope. California succeeded with a class action suit to halt similarly ill-thought out legislation last week.

Picture from here.

Why Even Bother??

OK Folks,

I am getting a little exhausted trying to have this conversation with person, after person, after person, after person... so I am putting this in writing! Please pass it along!!!

The Governor of New York is proposing massive cuts to programs to the OMRDD (developmental disabilities), and the OMH (mental health)offices in NY. These offices provide the structure and funding for most of the services that people in these populations receive in NY.

These are not cuts to next year's budgets, these are cuts in what they have agreed to pay THIS YEAR (don't try this with your bills at home!)

At the same time, members of the State Assmebly have proposed that Medicaid funding be cut drastically... now. Leaving people with disabilities and the elderly high and dry...

We know the state is in trouble-- at this point everyone heaves a big sigh and says


So, with no further ado, 9 reasons to take a stand on this issue for the elderly and people with disabilities today:

9. There is already a waiting list for services for people with disabilities in NY. These cuts will make that list and that wait longer. This system is currently the ONLY mechanism by which most people can receive services.

8. These cuts will not only mean cuts to operating budgets to agencies across the state. As a consequence of these cuts those agencies will also lose any matching funds they receive from other sources. Millions more will be lost to our state... many agencies may be forced to close.

7. These cuts will increase unemployment in NY--both for caregivers and for people with disabilities who rely on care so that they can work, and for those who require support for employment (this after the president has declared October National Disability Employment Awareness Month--is that ironic... or isn't it?)

6. Increased unemployment and poor care for people who need it will both cause a cascade of other problems for the state... all of which will cost.

5. Political Game 'A'. When a "leader" takes everything away from everybody and then gives back to whoever screams he/she emerges a hero.

It never fails:

Some group that doesn't have a voice won't scream so their programs will get cut which improves the bottom line.

AND the leader is seen giving to the screamers...

It's a win-win for any politician... (NY has seen tons of this, but I do not have time to create links for this--I have letters to write!!)

4. Political Game 'B'. The other most common political game is that no matter how many letters, calls, etc that a legislator's office may be receiving the legislator will tell the world
"I am not hearing from _______________" (insert name of whatever group they don't want to listen to.)
They must hear from us and we must make our presentation OBVIOUS to the rest of the world--through media, letters to the editor, and more--in order for our position to be recognized.

3. Political Reality 'A'. If your representation to the legislature is in the minority party, your job is bigger. Not only do your Senators and Assemblyfolks need to hear from you, but so do the Governor himself, as well as any committee chairs and the Minority and Majority leaders...

WE have to make it possible for them to be heard on our behalf.

(Are you listening, Monroe County?)

2. Political Reality 'B'. Our elected officials are politicians. Wheelers and Dealers Extraordinaires! This is their first proposal.

This proposal is the EASIEST (for them.)

It is NOT the best they can do.

Not even close.

If we accept the easiest, we will not get their best.

We deserve their best.

And.... ding, ding, ding....drumroll... fanfare and confetti.....

1. Our loved ones deserve and NEED their best.

(Take another look at the picture at the top!)

It is time to put our state government to work.

Are you psyched? Are you with me??? Are you ready to DO SOMETHING?????

Check back in a bit for a 'what to do' post.... give me a little while, I do not have magic typing fingers! :) But it will be today. The governor is bringing this to the legislature this week--possibly Tuesday.

Picture: NY State Senator Joe Robach at the Flower City Down Syndrome Network Buddy Walk. September 2009.

Monday, October 12, 2009

Ableism: C'mon People, We Can Do Better Than This!

Ruth at Wheelie Catholic posted this story this morning. Katja posted this story this weekend...

Is there an epidemic?

Last week I was grocery shopping and the checkout guy was a wheelchair-user. The lady in front of me got in line without noticing that. Once she did notice she started fuming about how she did not need this.... etc, etc, etc...

I offered to let her out of the line, but she said "NO, why should I change???"

I didn't say another word. This gal was a volatile mess... and I had a stomach ache (wimp, I know... I admit a fear of bullies.)

When she got up to the line she was quite rude to the kid, but my entire plan was to say supportive stuff to him when it was my turn...

Until she blamed him for not keeping track of her charge card (really loudly) and then she found it in her purse...

Then I said--pretty loudly myself-- "So, that was YOUR mistake then??"

She did not answer, after she left the kid thanked me, and so did the folks behind me in line... but I knew I should have said something so much earlier.

Ableism is a belief that the able-bodied are superior to those with disabilities. It is shocking how many people believe this--and how many act on it.

People like to believe they are superior?? They tell themselves people with disabilities are taking something away from them?? People like feeling powerful over other people??

All of the above???

I give up... I don't know what it is.

It is ugly and it is dangerous.

How do you think this study makes me feel? How does it make you feel?

I resolve to speak up more? Will you join me?

Picture from here, by Tim Malone

Sunday, October 11, 2009

Some Things I have Learned about Learning

Over the years working with our kids' teachers I have run into a few glitches in the common beliefs about learning that didn't work for my kids. I thought I would detail some things that didn't go the way I had expected so you could analyze your own programs and interactions and iron things out early.

Organizational Skills: One year my son's team agreed that my son did not have these skills and decided that he needed to learn them. They tried positive reinforcement, they tried negative reinforcement, they tried ignoring the deficit, they tried orgainzing for him and nothing worked. EVERYONE was miserable and frustrated.

After a ton of discussion it became clear that they were treating organization/disorganization as a behavior, rather than as a skill.

After this they started explaining, modeling and giving him practice, the way they would to teach other skills. THEN they started seeing some positive results...

Behavior: My daughter always rode the 'regular' bus with the rest of our neighborhood. In first grade she suddenly started throwing her shoes on the bus. Now, this is obviously a dangerous thing to do--clocking the busdriver, or anyone else, is not conducive to safe arrival... So, they put an aide on the bus for safety. The aide sat with my daughter and my daughter stopped throwing shoes...

One day I ran into her busdriver in the grocery store and I said that I was so glad that we had solved the shoe problem. He agreed that the shoes had stopped flying, but then he said something eye-opening. He said that we didn't really know if she had learned or was just stopped... He was right of course. There is a difference between being good and being controlled.

I called the school that afternoon and we had the aide moved out of my daughter's seat to allow my daughter to make choices, but to intervene if she made the wrong one... A much better plan, if you think about it.

It should also be noted that compliance by itself is not an appropriate behavior goal. One team I know of wanted to make "will not say NO" a goal for my friend's daughter. If she can't say no how would she deal with unsafe situations and people? That was NOT an appropriate goal.

For another disturbing behavior experience read this post.

Flashcards: Testing and teaching are two different things. You can practice retrieving information that someone knows by using flashcards, but you don't TEACH info by asking someone repeatedly if they know something. Enough said?

Reading Comprehension: I learned this mind-changing thought from David Koppenhaver: To teach comprehension let the reader know BEFORE they read what they are looking for. Endless quizzing is testing, not teaching.

You can do this with a beginning reader as you read. Pause and say "What is Junie-B going to buy?" Or "What is Charlotte going to write?" For Social Studies or Science let them see the questions at the end of the chaper before they read the chapter as well as after. Or teach them to ask themselves what they want to know in the upcoming reading...

Think about it, it makes sense. Do you have a better chance finding what you want by sending your kids to just go look around the house for a few minutes and then asking did they find your phone charger? Or does it work better if you ask everybody to look for the phone charger?

Discrete Trials: While this method is popular and effective for many kids, the applications needs careful consideration. For my daughter it seems to make disconnected information silos in her head. For what she learns to be useful to her she needs webs that connect new info with old in meaningful ways--this helps with retrieval. It also makes what she learns meaningful to HER, not just meaningful while being mediated by a partner in a certain proscribed way.

The Fry Word List: When Jenn was younger her team was looking for ways to teach her reading where they could document their results. They spent hours and hours working on this list of 300 or so words... The problem was that this list is made entirely of small words like if and and and the. Not a noun or a verb among them. It is totally boring. And after hours of tedium, when you can finally read the whole list there is not a single book you can then pick up and enjoy.

A lot of time and effort, excellent documentation, but no meaningful literacy gained. Another activity that only had meaning when someone else was there--if you found her word cards out of context--say on a bus seat--they would mean nothing to you or to her.

3x5 Cards: These are the bane of my son's existence. Teachers REALLY love them. My son can't write on them. He can't jot notes on little bitty cards and by the time he has he has memorized his note and doesn't need the card. Every year we have to discuss this. Every year. When sitting in meetings it is hard to think of alternatives. One can copy a page (using a copier)and highlight the needed info. One could do lots of things on the computer...

Readiness: It's not all it's cracked up to be! One of my son's teams wanted to remove him from the strong academic classes because he couldn't keep up with handwriting (pointing out that Stephen Hawking has "handwriting difficulties" yet still makes use of his education made everyone chuckle and re-think!) Readiness seems like an important concept, but even if my son can never handwrite well he will build his life on the info he has learned. We can teach skills, but we can't stop that info to teach the skills. Ever.

Readiness is also frequently used as a reason not to do things with my daughter--it's a reasonable goal, but should never be a barrier. Whether or not she knows her colors, she should be taught other things. (She does, but I'm just sayin'...)

I hope these examples help you analyze your own situation and avoid some pitfalls. Do you have other examples?

Saturday, October 10, 2009

The Best Part About Down Syndrome...

Down Syndrome New Mama started a meme called The Best Part About Down Syndrome. If you go to the comments section of her post you can read what a bunch of parents have written.

Now, I already included most of my favorite parts in this post this spring and I don't want to be repetitive except to say....

My favorite part about Down syndrome is....


Yes, it's sappy. Helloo-ooo, I'm her MOTHER!

Wednesday, October 07, 2009

Lots of Legislation: Walk through the Web With Me

Now the web on this tour is not like the lovely web in this picture... naturally not.

Our web is more like the one that I walked through on my porch this morning--all globbed up and folded on itself and stuck to me...

Now doesn't that sound like fun?

Seriously though, there is a lot of legislation and government activity going on right now that affects many aspects of living with disability. We can have an impact for ourselves or for our kids if we take action now.

First up, of course, is healthcare:

Healthcare coverage for people with disabilities is a very tricky and delicate proposal. And it not only affects people's health... it also impacts potential for employment and often even where a person with a disability can live.

Healthcare, is of course, necessary for people with disabilities and it can also be expensive. Therefore employers are often hesitant to hire people whose high health needs will make insurance more expensive for their company...

Employeers often need not worry though... even if they did hire someone with a disability and offer them insurance the likeliehood is that the person with a disability would be turned down for coverage because their disability is "pre-existing condition."

So then what does a person who needs care do? They sign on for Medicaid.

The care can be ok depending on your state, your town, your caregivers and all, but now you have to stay eligible...

To be eligible for Medicare and Medicaid you can't have more than $2000 in assets to your name.

So you can't work. At least not much...

This is why so many people with disabilities want a public option for health insurance--something affordable that they can buy on their own. So they can separate their healthcare from their employer AND make a living...

Action: Call (800)828-0498 and ask to be put through to your Senator's office. Let them know that these issues matter to someone you love.

More about healthcare:

Under the current payment systems for Medicaid and Medicare funding is guaranteed for people who live in nursing homes and other institutions and not guaranteed except under a variance for people to live in their own homes in the community.

Now living in your own home is more desireable, AND it has also been proven to be more cost-effective... but that isn't where the money goes. This 'institutional bias' forces many people who could live and work in the community to live in care systems they neither need or want...

What is being proposed under the Community Choice First Act is that the "money will follow the person" rather than the current system of the money going to organizations to divvy up the way they choose. This will allow folks who need or want more comprehensive care in a small or large facility to have the funds for them spent that way. And for the folks who want to stay home, the money for their care can be spent on community-based services.

Action: Check out this website and this website. Then go to this page click on the healthcare reform issue and fill out the capwiz. It will take about 5 minutes...

Now, about employment:

As you can see in this article, President Obama has declared that October is Disability Employment Awareness Month.

Creating employment opportunities for the 65-75% of people with disabilities who are unemployed in this country, most of whom live in poverty (see above) will improve their lives...

It will also improve the economy. There are millions of folks who are not participating in the economy either as worker or as customers because of the unnecessary poverty that is foist upon them.

This is NOT the future I want for my daughter.

Action: Pay attention locally for forums, discussions and events. Participate. Get to know the folks there. Pay attention to barriers and help build bridges in your workplace and community.

And the good news:

Not only can you have an impact on a complex and sticky bunch of issues, but it's actually good for you.

Yep, it's true. Read this article.

Now, aren't you glad you stopped by?

Picture from here.

Tuesday, October 06, 2009

Introducing Embry Burrus, Author of Mama and Margaret

Hi, my name is Embry Burrus, and my big sister, Margaret is one of the funniest, coolest people I know. In fact, she is one of my most favorite people to hang out with. She loves to have fun, and is always ready for a new adventure – no matter what it is, Margaret’s up for it! She is also one of the most loving, kind and non-judgmental people I know, too. She shows me everyday what unconditional love truly is. She is the best sister anyone could hope for.

Oh, and by the way, she has Down syndrome.

That used to be the first thing I would tell people about Margaret, as if I needed to “temper” whatever I said about her with those words: She has Down syndrome.

But now, I realize that the fact that she has Down syndrome does not define her at all. People don’t like to meet Margaret and hang out with her because she is all of those things and she has Down syndrome; they like to meet her and hang out with her because she is all of those things, period.

What an awakening that has been for me—one of the many things I’ve learned from being Margaret’s sister.

I realized several years ago that there was a wonderful story in Margaret’s life, and in the journey that I have taken in being her sister, so I’ve written a book about her, and our now 90 year old mother. If you’d like to meet both of them, please visit my website .

I look forward to meeting everyone on this blog, and thank Terri for the opportunity to contribute my story!

Saturday, October 03, 2009

October is Down Syndrome Awareness Month

I am not going to promise 31 posts about Down syndrome this month because there are just too many things I want to write about, but I do have a few treats planned... Stay tuned!

Friday, October 02, 2009

Shedding a Little Light: NVLD Strategies That We Have Tried

Since my son's diagnosis with Non-Verbal Learning Disability in the 4th grade we have done a lot of learning.

When he was diagnosed I turned first to the literature... this turned out to be a huge mistake. Not only is much of the literature distressingly negative (I actually threw one book away so my son would never see it!)The literature also offers pitifully few useful strategies.

I did eventually find a book I liked (see right sidebar.) From this and from our experiences with our daughter we found/developed some things that worked for my son--ways to improve skills and ways to mitigate or accommodate weaknesses.

I know each person is individual, but thought if I shared the way we analyzed situations others could build on them.

1. Begin by trusting yourself and paying attention. You can figure out ways to approach most issues.

2. Analyze your situation. I know, for example, that many of my son's difficulties come from integrating two tasks at once. I know that if I can figure out the words to say he can understand a lot. And I try to know what motivates him--and what doesn't!

3. Figure out specifically what is needed. Somtimes skill practice is in order, sometimes an accommodation is in order--sometimes you go over the mountain, sometimes around.

4. Learn your rights and develop advocacy skills. There are many things you can work on at home, but you will most likely have to negotiate with someone somewhere along the line. This is another learned skill--read, study, practice.

Here are some specifics that maybe you can springboard off of:

Visual skill practice:
-video games (choose strategically.)
-bike riding
-map reading
-folding (laundry or origami!)
-crosswords/word searches
-playing catch

Logic and inferencing:
-Lots of discussion about what would happen if...
-predicting sports, discussing outcomes and what would have been different if...
-comment on movies, tv, other situations
-storytelling and creative writing

(Remember, your child may process best verbally and may do a lot of their thinking out loud. Don't interrupt or answer too many of their questions too quickly if this is the case. A short answer seems convenient, but stops them thinking. Lots of "Hmmm, that is a good question... what do you think??")

Social practice:
-analyze situations out loud
-practice scripts for starting conversations in predictable circumstances ie: phone answering, calling someone, etc (this buys time for processing the unfamiliar)
-discuss what you see on TV or in movies

-explain processes verbally
-have them explain their processes verbally
-when lost analyze where they got lost--one child I know got terribly stuck because they missed the definition of the words sum and product... lots of lost ground, but a very simple solution in the long run.
-Look for teachers who use lots of verbal explanations.

Executive Function (organizing self, work, starting, finishing, analyzing)
-Clear bins for storage if visual memory is poor
-calendars with alarms
-my son can't estimate how long something will take so I tell him he must prioritize by need/due date, (In other words do homework first, don't just leave an hour for it--this is not perfected yet!!!)

These are my ideas. What are some of yours? What strategies have built bridges for you or your child?

The picture is of my son and the Charlotte Lighthouse--not Char-lit like NC, Char-Lot as in part of Rochester.