Action: Sharing the story of "Who Inspired Me" at a high school reunion

Submitted by:  Sharon Cohen

"[My action is] sharing about "Who Inspired Me" with my high school classmates.

... for my 50th high school reunion (held September 24-26th in Geneva, Illinois) ... each of us was asked to write about our lives and include a memory of someone or something that "inspired" us. I chose to write about my high school beau. He was a very charismatic, athletic, fun-loving young man who happened to be an individual with a disability. He always lived life to the fullest, had a very positive attitude and faced his challenges with grace, dignity and great determination. I have always felt that he "inspired" me, and I wrote that I feel I took my particular career path due to this inspiration."

Idea and Action from a Group: Developing a proposal and gaining interest for establishing a "Texas Social and Emotional Wellness Center for Children and Families"

Generated by:  A Group of Children's Mental Health Advocates
Submitted for posting by:  An advocate

"...[In working] with the national technical assistance center associated with Georgetown University and other “Centers of Excellence,” [we've] wondered if we, in the great state of Texas , could support a central hub or center [the Texas Social and Emotional Wellness Center for Children and Families] in partnership with higher education. It certainly makes sense ...   [We are] asking around and gaining interest from partners, especially within the mental health transformation effort...  [W]e collectively did some research from other states and developed a proposal... [and] are doing presentations to different groups and individuals...   A better informed workforce (from higher ed), promotion of evidence-informed practices, databases of credible training and technical assistance…the potential goes on and on." 

Idea and Action: Learning more about the new Medicaid option for children with chronic conditions

Submitted by:  Bryan Sperry

"I am going to learn more about the new Medicaid option to create medical homes for children with chronic conditions."

Ideas and Actions: Focusing the Affordable Care Act Pediatric Medicaid pilot in Texas on children and youth with special health care needs and personally providing medical care and input to help improve systems of care

Submitted by:  Bob Warren 

"I want to see the Affordable Care Act Pediatric Medicaid pilot in Texas focused on [Children and Youth with Special Health Care Needs] CYSHCN!  Let's pull the state, children's hospitals and health plans and parents together to build a - cost-effective - plan that's comprehensive, goal-directed, and evidence and outcomes-based.

And yes, I "do my thing" everyday ... taking care of kids and families with disabilities, and (hopefully) improving systems of care."

Action: Videobroadcasting the 11th Annual Chronic Illness and Disability Conference to a national audience

Submitted by:  Al Hergenroeder

"We are trying to work out the details, but the plan is in place to videoconference the Transition Conference this year [the 11th Annual Chronic Illness and Disability Conference to be held November 11-12, 2010 in Houston, Texas] to 5 sites around the US, all [Maternal and Child Health Bureau] MCHB-funded training sites.

The audience could increase significantly."

[Added Note:  The brochure for the conference is located at the following url: http://www.baylorcme.org/pdfs/11th_Annual_Chronic_Illness_and_Disability_rev_Brochure.pdf.]

Idea: Envisioning empowerment of parents of children with disabilities

Submitted by:  Linda Jones

"My wish is that all parents of children with disabilities be the most empowered people on the planet!!"

Actions: Creating a family newsletter and donating to Special Olympics

Submitted by:  Tricia Yacovone

"In addition to creating the [October, 2010 Children with Special Health Care Needs Services Program's Family] newsletter, I donated some money to Special Olympics."

[Added Note:  The url to locate the October, 2010 Family Newsletter is: http://www.dshs.state.tx.us/cshcn/newsletter.shtm.]  

Idea and Action: Having empathy and respecting and showing kindness to others

Submitted by Robin Milner:

"... my "everyday" gift is to try to greet and treat everyone with friendliness and respect.  And to always remember that everyone has their own journey to travel and goals to reach.  That person's marathon is my 5k. My 5k is someone else's first step. None is better than the other and all are equally difficult and rewarding."

Idea and Action: Realizing the need for accessible portable toilets and writing and submitting an op-ed on the subject

Submitted by:  Mike Spencer 

"After the LBJ holiday when I went to the ranch out by Fredericksburg , I noticed for the celebration a row of “porta-poddys” and noticed one was larger and designed for wheelchairs or other people with disabilities that needed more room.  My whole drive back I thought about that (I even took a picture of it) and it got me thinking of how many public events I’ve been to that do not have these types of accessible features for persons with special needs. 

So my “special” thing for the month of September was that I wrote a short op-ed piece and sent it to a few newspapers (Austin American-Statesman, Indianapolis Star News, Washington Post) for publication. 




I didn’t see where it ended up in any of these publications, unfortunately.  I think I’m going to try to send it again to the Statesman next week and tailor it more towards the South by Southwest crowd that will be here weekend after this coming one." 

Action: Providing information to parents on child learning and teaching during clinic visits

Submitted by:  Sherry Vinson

"I made the decision to take five minutes during every clinic visit to make certain to review with each of my  patient’s parents, no matter their child’s disability, that they should use the same principles for helping their child learn that they use for learning something difficult themselves. These principles include breaking down what they are to learn one step at a time and connecting it to what they already know followed by repeated practice. I have found this month that by reviewing this information my patient’s parents have become empowered as their child’s teacher even when school services have been inadequate, giving the parents a common sense approach to use daily until appropriate services from elsewhere can be added. This has been especially helpful for empowering immigrant parents with only second/third grade educations  who had never thought they were “smart enough” to help their children."

Sherry Sellers Vinson, MD, MEd

Neurodevelopmental Disabilities Specialist

The Meyer Center for Developmental Pediatrics

  At Texas Children’s Hospital

The Developmental High Risk Clinic

  At Ben Taub General Hospital

Program Director, Neurodevelopmental Disabilities Residency

Baylor College of Medicine

Action: Sharing a poem for inspiration and strength

Submitted by:  Randy and Wren Deavers (and their two children) 

"Being a father of a special needs child, I can think of no better words to share at this time than a poem given to me when Landon was born (January 26, 2006)….it remains on our fridge to this day and it has given both Wren and I strength, especially when Landon was in NICU when we received his diagnosis.

“God hath not promised

 skies always blue,

Flower strewn pathways

 all our lives through;

God hath not promised

sun without rain,

Joy without sorrow,

peace without pain.

But God hath promised

strength for the day,

rest for the labor,

light for the way,

grace for the trials,

help from above,

unfailing sympathy,

undying love.”      Anne Johnson Flint"

Action: Volunteering in the church choir and in a school to help children with disabilities and their parents and attending a Special Needs Expo

Submitted by:  Lillianne Goeders

"I have recently joined the choir at my church.  There are several young adults who come to choir from Marbridge and there is at least one foster child (I think that she is 14) with minor special needs in the choir.  I have made it a mission to spend extra time with two of the members with special needs. I also attended [a school's] Special Needs Expo on Saturday.  I met many of the parents whose children attend [the school] and who have special needs children.  I am also working with the Special Needs Director [at the school] to analyze community needs for future events."

Idea and Action: Promoting and implementing the "Reach Out and Read" model

Submitted by:  Clift Price

"My thought is to ensure that all children with disabilities are provided  appropriate books at each well child visit beginning at 6 months of age with instructions to the parents to read to the child each day for 15 minutes. This is the "Reach Out and Read" model."

Actions: Volunteering in multiple ways for the community as a member of St. Vincent de Paul

Submitted by:  Anonymous   

"I am a Vincentian; a member of St. Vincent de Paul, a world wide 250 year old organization that is dedicated to the service of the poor, the lonely, the marginalized etc.

We do whatever we can to help. We go on home visits (no long lines for the poor to wait in; we try to respect their dignity) to access their needs & befriend them & to pray with them (if they want us to).  We give them groceries & help pay their utility bills, rent, prescriptions etc.  We help transients by putting them up in a motel & giving them a meal.  My husband used to drive 2 men to dialysis from Elgin to Austin ; they have both since passed away.  We recently finished working with the Capital Area Food Bank [CAFB] & the federal government in administering the Summer Food Program by distributing 2 boxes of 25 lbs of food to families with children for each month of the summer. 

I order food from the CAFB for our food pantry & my husband goes & picks it up & stocks the pantry. We also go to HEB for other groceries for the pantry.  We collect Christmas presents for our client/friends & give out HEB gift cards at Thanksgiving. 

I’m the treasurer for our conference & have an annual report due the end of October." 

Action: Analyzing the need for "safety net" services for children with special health care needs

Submitted by:  John Scott

"As part of my job during September, I helped analyze and describe how there will be an ongoing need for “safety net” services for children with special health care needs and other populations even after the new federal health care reform legislation goes into effect."

Action: Talking with a relative about working with children with disabilities

Submitted by:  Nancy Rosenau

"I vowed to talk to my [relative] about ... shifting her worklife to supporting kids with disabilities and their families.  

In her current work ... she [has] liked best ... [working with] kids with disabilities...  

I talked with her about the the never-ending supply of families who need support and how she might connect with an individual family or a provider who serves families.  Who knows:  maybe one more recruit for the support army."

Idea and Action: Creating an online petition to gather and document support for the Children's Policy Council's 2010 Recommendations to the Texas Legislature

Submitted by:  Lesa Walker

"I am thinking of creating and circulating an online petition to support the Children's Policy Council's 2010 Recommendations to the Texas Legislature and I have drafted language for the petition."

Action: Making a monetary donation to help children in Ghana

Submitted by:  Kathy Griffis-Bailey (representing a group of co-workers)

A group of co-workers decided to make a monetary donation to the service organization "GlobeAware"  which will be used to help children, including children with disabilities, in the village of Mafi-Zongo in Ghana.

Action: Helping a child in Cub Scouts

Submitted by:  Liz Shelby

"The one thing I have chosen to share with you occurred last Saturday. A little background…I have recently become more involved with a Cub Scout pack since its Cubmaster passed away suddenly in her sleep. She was a single mom and 41 years old! At our first meeting since the funeral, our Scout Executive (paid professional from the scout office) passed out belt loops and pins to the cubs who went to summer camp. One cub began crying because he didn’t go and didn’t earn the awards. Why he didn’t go is another story. But on Saturday, there was a Cub Scout event at Camp Tom Wooten in Bastrop in which the Cubs could earn belt loops. He really wanted to go and his family had been approved for a financial needs scholarship. However, both of his parents have visual impairments and do not drive, and public transportation does not go to Bastrop. After trying to get someone who could drive them out and back from my church and other organizations, I decided to do it since this was the first Cub Scout camp experience for the mom and her 10 year-old son. They had to be there by 7:30 AM which meant picking them up at 6:30 AM. I dropped them off and returned to Austin. When I went back to get them, they were both tired, hot, and happy. I arrived just in time to help the Cub make a rocket which required visual skills that his mom could not help with. You should have seen his face when his rocket was launched!! They had a wonderful experience. On the way home, the mom asked if Boy Scouts serve boys who are blind or visually impaired, and I could proudly tell her that the Boy Scout program has been inclusive since its inception in 1910 – pretty progressive for its time! Now, this isn’t a story about a “child with a disability” but for me it was making things possible for a child whose parents’ disability almost prevented him from have the time of his life – a day he will be talking about for a long time (and so will Mom for that matter!)."

Action: Sharing information about a new resource guide for children with special needs

Submitted by:  Elaine Hime (sharing information about the work of Bethany Miller (parent) and Kendra Koch of the CChiPAG (Complex Chronic Illness Parent Advisory Group) of Dell Children's Medical Center (DCMC) Palliative Care in Austin, Texas):

"The Complex Chronic Illness Parent Advisory Group at Dell Children's with the support of one of Children with Special Health Care Needs (CSHCN) Services Program's Medical Home grants has produced the Austin Area Resource Guide for Children with Special Needs.  The CChiPAG used the template of my Resource Guide [for the Houston area] and the portions that pertained to the state, filled in the rest with Austin info and added additional sections.  The Austin Guide looks great and I am very proud of Bethany Miller (parent) and Kendra Koch of Seton who worked so hard on tracking down the Austin info and getting the Austin Guide to the printers.  The CChiPAG printed 5,000 hard copies.

Below is the link on the Dell Children's website for the Austin Guide.

http://www.dellchildrens.net/services_and_programs/palliative_care/complex_chronic_illness_parent_advisory_group_/"

[Added note: Elaine Hime's Resource Guide for the Houston area is found at: http://www.projectdocchouston.org/html/resource_guide.html.]

Actions: Volunteering in Extend-A-Care; mentoring; nutrition education; and holiday assistance

Submitted by:  JaNet Barkley-Booher

"Technically, my volunteer efforts are not directed toward kids with physical disabilities, but toward kids in general and mentally ill adults, which often involves kids with physical and/or emotional disabilities.  Also, I’m not really doing anything new, as I have been doing most of it for a long time.  So, here is the stuff I do to give back for my good fortune in health and life.

Year round:
Extend-A-Care for Kids, Inc board member:  EAC provides after school, school break and summer care to elementary aged kids in Austin, Hays and Del Valle schools districts, including many tuition scholarships for low income kids.  Affects about 2900 kids in the Austin area.  It probably keeps some kids from becoming disabled, as they likely would be latchkey kids without the subsidized care.

September:
    1)  Signed-up again to mentor a child at the elementary school near my home.  I’ve done this for 5 years.  Kids have been either low income or have emotional issues.
    2)  For the 2nd year, organized and helped conduct the “Eat a Rainbow” program for 2nd and 3rd graders from 3 schools through the Travis County Master Gardeners’ Program — to encourage kids to daily eat fruits and vegetables reflecting the colors of the rainbow so they have healthy bodies.  I’ve helped conduct it 4 times.  This year we did the program with 400 kids; last year it was about 350 kids.

November- December:
Collect, purchase and encourage others to help in creating 450+ Christmas gifts for mentally ill adults and their children in the Austin area (served by Austin Travis County Integral Care (formerly ATCMHMR)).  These gifts contain new or like-new XL+ T-shirts, tooth brushes/paste, toiletries, socks, games, individually wrapped snacks, fun stuff (whimsy items), children’s books, toys and stuffed animals, etc and average about $10 each.  We wrap them and Santa helps present them at a consumer party held a few days before Christmas.  For many, it is their only holiday celebration.  I also collect and buy Christmas decorations and after the party consumers take them to decorate their home or sleeping area.  A local church provides the BBQ meal and a local band plays music.  It is a festive event for a very needy population.  They and their children are delighted to receive a gift and a meal and have a good time.  My sister and I started contributing to this party at the request of an ATCMHMR/Integral Care Rehab Therapist some 15 years ago and it has grown in attendance each year (from about 50 to now over 435 people). Integral Care uses the party for improving socialization skills of their consumers and providing them with some holiday cheer.  Integral Care is looking for a large facility on a bus line for this year’s party, as we have outgrown Fiesta Gardens’ capacity.
    If any of your friends wish to help with any part of this effort, please give them my email.  As the economy gets worse, the more gifts are needed since more consumers and their children attend the party.  I’m thinking we need at least 500 wrapped gifts this December.  I have found from my friends and neighbors that even they are helped by donating stuff they don’t need in their homes — stuff that is in excellent condition and they have saved or received for some time and just cluttering-up their houses.  They like to see it go to someone as a nice surprise/gift for Christmas.  So, the giving itself has a “starfish effect” for them as well as for the mentally ill consumers."

Action: Creating a transcript of an inspiring video to enhance accessibility to the video content

Submitted by:  John Walker

"This is a great story to share with children:

The Secret to Life: http://bit.ly/94VW3y

The YouTube version is outstanding:

http://www.youtube.com/watch?v=U3NgzQ9Pcsg

I created a transcript so that children with visual and auditory impairments could experience the magic of this story."

[The transcript is below.]

"Life is Like a Cup of Coffee

A group of alumni, highly established in their careers, got together to visit their old university professor. Conversation soon turned into complaints about stress in work and life.

Offering his guests coffee, the professor went to the kitchen and returned with a large pot of coffee and an assortment of cups: porcelain, plastic, glass, crystal, some plain looking, some expensive, some exquisite.

He told his guests to help themselves to the coffee.

After everyone had a cup of coffee in hand, the professor said, 'If you noticed, all the nice looking expensive cups have been taken up, leaving behind the plain and cheap ones. While it is normal for you to want only the best for yourselves, that is the source of your problems and stress.

Be assured that the cup adds no quality to the coffee.

In most cases, it is just more expensive, and in some cases, even hides what we drink. What all of you really wanted was coffee, not the cup.  But you consciously went for the best cups...  And then you began eyeing each other's cups to see who had the best one.

Now consider this...

Life is the coffee; the jobs, money and position in society are the cups. They are just tools to hold and contain Life and the type of cup we have does not define, nor change the quality of life we live. Sometimes, by concentrating only on the cup, we fail to enjoy the coffee.

Savor the coffee, not the cups!

The happiest people don't have the best of everything.

They just make the best of everything.

Live simply.

Speak kindly.

Care deeply.

Love generously."

Source:  http://www.youtube.com/watch?v=U3NgzQ9Pcsg

Idea and Action: Sharing an inspiring quote and links to the original source

Submitted by:  John Walker

"Idea: to share this quote and link to original source."  (He also shared the picture above.)

[The quote is the following:]

"...caregiving is...a defining moral practice. It is a practice of empathic imagination, responsibility, witnessing, and solidarity with those in great need. It is a moral practice that makes caregivers, and at times even the care-receivers, more present and thereby fully human.
If the ancient Chinese perception is right that we are not born fully human, but only become so as we cultivate ourselves and our relations with others—and that we must do so in a threatening world where things often go terribly wrong and where what we are able to control is very limited—then caregiving is one of those relationships and practices of self-cultivation that make us, even as we experience our limits and failures, more human. It completes (not absolutely, but as a kind of burnishing of what we really are—warts and all) our humanity. And if that Chinese perspective is also right (as I believe it is), when it claims that by building our humanity, we humanize the world, then our own ethical cultivation at the very least fosters that of others and holds the potential, through those relationships, of deepening meaning, beauty, and goodness in our experience of the world." - Arthur Kleinman

Source:
http://harvardmagazine.com/2010/07/on-caregiving
http://harvardmag.com/pdf/2010/07-pdfs/0710-25.pdf
http://harvardmagazine.com/sites/default/files/Lancet_Catastrophe-and-caregiving.pdf
http://harvardmagazine.com/sites/default/files/Lancet_Caregiving.pdf

Action: Finding and sharing an inspirational news story

Submitted by: Larbi Hanni 

"This story is amazing and truly inspiring.  Hopefully, it will give folks an idea of the challenges that face people with disabilities on daily basis and perhaps motivate them to extend a helping help hand."           

[Click on the link below for the news story.] 

http://sports.espn.go.com/espn/news/story?id=5489877

Action: Volunteering with high school students

Submitted by: Anonymous

"I will determine whether [a specific] Independent School District needs volunteers to assist high school students who are children or youth with special health care needs.

... maybe a tutoring-type situation, working on a couple of Saturdays per month with individual students, almost any subject, and/or if there are other activities that occur on weekends – sports events or other school-sponsored weekend events – I could help with transportation, chaperoning a group, or accompanying an individual. With students learning life skills, I could reinforce classroom learning with “real life” experiences to train and monitor meal planning, go shopping, help with laundry, go to church . . .”