January 30, 2012 · 8:55 AM

Story and Photos by Kris Lawrence

OHS Cheerleading Coach Michelle King invited Octorara High School Senior Catherine Lasak to be a part of the cheerleading squad at the boys basketball game against Radnor.

Catherine showed her support for the team by cheering and encouraging the team, performing some of her dance moves that she has learned at the Oxford Center for Dance and being a proud Octorara Brave.

Catherine was born at Jefferson Hospital with a 7% chance of survival.  She was born with a hole in her heart and also has Down syndrome.  Many of us consider her our miracle.  She makes us smile, laugh and appreciate life.

Catherine is pictured above cheering in the stands and doing a split in front of the squad.  The cheerleading squad invites Catherine back to the gym another night to support the team.

The Braves defeated Radnor. We would all like to thank the Cheerleading Coaches, Squad and Catherine for allowing all of us to enjoy the evening even more!

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If you, or someone you know are interested in this program, or want to learn more, please call Kathy at (215) 204-9395, or millerk@temple.edu.

Please do not delay; application deadline is January 27, 2012.  Session location is Dolce Valley Forge Hotel, King of Prussia, PA.

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The political climate for people with disabilities is getting worse in Pennsylvania.   This administration has stepped away from working with self advocates and family advocates.  The cuts to the budget have been drastic and more are going to follow. The service definitions are moving away from being person centered. It is critical that we act together and make our voices heard.  WE MUST ALL ACT TOGETHER.

THIS IS A CALL TO ACTION!!  WE MUST STOP  SERVICES AND SUPPORTS FROM BEING REDUCED AND ELIMINATED. This is the first call to action and one that we hope to see as many families participate in as possible. The  actions of this administration are a threat to all disability groups and so we are asking all groups to share this call to action with all of your members and interested parties.

1) Write a letter to the Governor, use the template below as a starting point.  Tell Governor Corbett that we need him to step up and follow through with his campaign promises to the disability community.

2) After writing the letter include a family picture or a picture of your family member who needs services and put it in a box or a tube.  This letter needs to be mailed, hard copy and mailed in a way that will make them take notice. Imagine 5,000 boxes arriving in the Governor’s office, that will help to make our statement . Boxes are tough to ignore and we don’t want this administration to ignore our community as they craft the budget.  It will cost you between $2 – $6 to mail it but it is critical to make a point.

Mail it to The Honorable Tom Corbett
225 Main Capitol Building
Harrisburg, Pennsylvania 17120

BY JANUARY 20th.

3) You can send the same letter in an e-mail or letter to your State Senator and State House Representative.

Follow up with a phone call or a fax

Phone: (717) 787-2500
Fax: (717) 772-8284

The One Voice Coalition

SAMPLE FAMILY LETTER:
Dear Governor Corbett,
First, our family would like to say how much we appreciated your campaign promises to those with disabilities. You said, “Community-based services, as opposed to state run institutions, are now the mainstream and are the most cost-effective and preferred services by most individuals with disabilities and their families.” Unfortunately, you did not take the next step to make your words a reality.  You failed to request the funding necessary to provide those community-based services to any of the 15,794 persons with disabilities waiting for services. Not only is there no money to serve persons on the waiting list, but provider rates have been cut to a point that many providers are unable to continue to serve those individuals with high care needs who were lucky enough to get on one of the state’s waiver service programs.  We are well aware that these are difficult times fiscally for the state and you are faced with difficult choices.  In making those difficult choices, we feel it is crucial that you are aware of the human and fiscal consequences of your budget choices.

[Give your personal story. Include what he/she can do now and what services he/she is receiving in order to do this. Also include his/her needs and what you/school/psychiatrist/PCP/etc see happening if he/she loses these current services (e.g. will lose skills that education/BHRS/family/individual has worked on and the state has put money into developing: If he/she had ESY during school because without it in those few summer months he would lose skills - that would be good to add. Without ongoing support statistics support regression in skills and behavior …if a parent has to give up a job and therefore not contribute taxes to PA they should say that. If a single parent/family will need to go on welfare to be at home with their adult they should say so. Parents need not be shy about including all diagnoses, med needs, behave needs, etc. Focus on how lack of services will affect the adults (and any family members, or community) health and safety.]

[Example- use your own story]
I have enclosed a picture of my son Benjamin Rzucidlo. He will be 20 years old on January 12, 2012. We live in Chester County Pennsylvania. Ben is our second born child and is one of four. When Ben was 2 years 9 months of age he was diagnosed as being severely impaired with infantile autism and he carries a secondary diagnosis of a profound Intellectual Disability.   We were told when Ben was three years old to place him in an institution because he would never speak, be toilet trained or even be able to feed himself. We chose not to do this but worked instead with Pennsylvania’s educational, BHRS and EPSDT services. Together, with many hours of coordinated services, family support and hours of work from us all, Ben does speak, he has been able to feed himself for many years and was toilet trained just last month. He is able to live at home, work in the community, and has progressed far beyond original expectations.

Ben currently works 3 part time volunteer jobs through his school program, which provides valuable contribution to his community. He goes to our local YMCA, attends Church with our family, goes out to movies, dinner, on vacation and has a full and complete life with friends. Ben is also non verbal, he elopes when left unsupervised, he has no safety, traffic or stranger danger awareness and requires ongoing services from the state in order for him to be able to be a part of his community and family. Right now he receives 28 hours per week of Home Health Aide Services, 15 hours per week of BHRS services, and he has a full school day program with one-on-one assistance. Once Ben turns 21 he will lose the Home Health Aide services, BHRS and School services. I am told that there is no funding for him to access a waiver so he will no longer be able to be a participating and contributing member of society. One of us would have to give up working in order to supervise him during the day and so our contributions to the state in the form of taxes collected would decrease and when his father and I are unable to care for him there would be no choice but to claim the only entitlement due him as an adult, being placed in an institution (Intermediate Care Facility), at a cost to the state of no less than $240,000 a year. Ben needs 24/7 supervision, so the cost for caring for him in an institution will be considerably higher.

Ending:
Governor Corbett, you stated in your campaign promise that you “value all children and adults with intellectual disabilities as fully participating members of society.” And “you understand their desire to self-direct their lives and achieve their potential and you will work to provide them with the support they need.”  This is why I was so surprised to hear Secretary Alexander is working to reinvigorate the state institutions Pennsylvania’s movement towards institutional care under Secretary Alexander is the exact opposite of what you promised during the campaign and a far more expensive path than community based services.
Governor Corbett, I am asking you to work with the Senate and the House to take the fiscally responsible path and not expand institutional care. The cost of gearing up institutions to put the 1700 people currently on PA’s emergency waiting list in state run institutions will cost the state more than $240,000 per person PER YEAR or more than $408,000,000 ANNUALLY.  That is money the state just doesn’t have and a situation individuals and families don’t want. Please remember the Department of Public Welfare of PA’s mission statement: “Our mission is to promote, improve and sustain the quality of family life; break the cycle of dependency; promote respect for employees; protect and serve Pennsylvania’s most vulnerable citizens; and manage our resources effectively”.
Our family thanks you for honoring Pennsylvania’s long-standing commitment and your campaign promise.

Respectfully,

YOUR FAMILY
One Voice Coalition Members

Judy Chabanik
Parent

Dee Coccia,
Co-Executive Director
Visions for Equality

Maureen Devaney,
Co-Executive Director
Vision for Equality

Courtney Donovan
Parent

Sharon Ferry
Parent

David Gates
Pennsylvania Health Law
Project

Felicia Hurewitz
Parent

Holly Kosky
Parent

Ruth K. Landsman
Parents Exchange

Nancy Murray
ARC of Allegheny County

Diane Perry, Parent

Nancy Richey, Parent

Debbie Robinson
Speaking for Ourselves

Susan F. Rzucidlo Parent
SPEAK Unlimited

Sheila Stasko, Parent
PA Waiting List Campaign

Lisa Tesler Parent

Sabra Townsend, Parent

Rae Unger, Parent, Founder of Autism Living And Working, Inc. (ALAW)

Becky Willmot
Executive Director
(ALAW)

Karen Woodings, Parent
Autism Society of America, Greater Harrisburg Area Chapter

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Article by Kimbery Hayes Taylor, msnbc.com contributor

updated 9/29/2011 8:17:09 AM ET 2011-09-29T12:17:09

David and Annelies Reilly had dozens of questions swirling in their minds when doctors diagnosed their newborn daughter, Melissa, with Down syndrome.

Could she learn? Would she go to school? Could she ride the bus alone? Could she live a normal life? Could they?

Melissa, now 25, is successful by any measure. The college student is a speaker invited to inspire others around the country. She travels to represent the Down syndrome community internationally, and is a Special Olympian who brings home gold medals in skiing, cycling and swimming. Additionally, she interns for a Massachusetts state senator and tutors pre-school students with Down syndrome in math and reading.

“She has taught us compassion for those who are not as strong or so-called perfect and beautiful,” says Annelies Reilly of Boxborough, Mass. “We see her as perfect and beautiful.”

Inspiring portrait of Down syndrome at odds with perfect baby pursuit

The Reillys represent some of the experiences reported in three surveys conducted by doctors at Children’s Hospital in Boston that suggest the reality of Down syndrome is positive for a vast majority of parents, siblings and people with Down syndrome themselves.

Among 2,044 parents or guardians surveyed, 79 percent reported their outlook on life was more positive because of their child with Down syndrome.

This is particularly relevant as a new blood test to determine Down syndrome early in pregnancy is expected to be available within months.

Dr. Brian Skotko, a clinical fellow in genetics at Children’s Hospital Boston and lead study author, says he hopes the research on more than 3,000 Down syndrome patients and family members published in the October edition of the American Journal of Medical Genetics, will serve to better inform expectant parents and clinicians providing prenatal care.

“So many American women who are pregnant are getting prenatal diagnoses of Down syndrome, and then they ask all those pertinent, relevant questions: What does this mean for my family? What does this diagnosis mean for my marriage? What impact will it have on my other sons and daughters?” Skotko says.

Skotko also found that among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome. A third study evaluating how adults with Down syndrome felt about themselves reports 99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked.

“I love my life 100 percent,” says Melissa, explaining that her brothers’ and sister’s friends are her friends, too, and she accompanies them on outings and vacation. “I love my life for the things I do, and the places I go. We are one happy, loving family.”

Each year, about 6,000 or one of 691 babies is born with Down syndrome in the United States, reports the Centers for Disease Control and Prevention. The chromosomal disorder carries a range of intellectual impairment and other health problems, including heart and stomach defects, a weak immune system, poor hearing — and a shorter lifespan. Some with Down syndrome, like Melissa Reilly, are high-functioning, loving and quite healthy. Others, though, are so severely disabled they cannot communicate. Even on the healthier end of the spectrum, people with Down syndrome tend to die younger, in their 50s.

Currently, some pregnant women get blood tests and an ultrasound to find out if the fetus is considered at risk. But a definitive diagnosis requires sampling amniotic fluid or the placenta – and invasive procedure that carries a small — but unnerving — risk for miscarriage.

Thousands of women a year opt to terminate pregnancies when their unborn child has Down syndrome. Some estimates put that number as high as 90 percent, according to Boston’s Children’s Hospital.

But soon, the first non-invasive and inexpensive blood test will allow pregnant women to know if their fetus has Down syndrome in the early weeks of pregnancy. The test, expected to hit market later this fall, detects fetal DNA in a mother’s bloodstream.

Bioethicist Art Caplan says the ease of this test raises the possibility that Down syndrome will slowly disappear from our society.

Skotko, the genetics researcher, also has a 31-year-old sister with Down syndrome. He says she is the inspiration for his practice and research on the condition and that it’s critical for families to receive accurate and unbiased information, and they should know raising a child with Down syndrome can be a fulfilling and rewarding experience.

“Now, we have heard from 3,150 family members around the country on what this is like. This information will be very helpful as women make many personal and profound decisions about their pregnancies.”

Caplan, a professor of bioethics at the University of Pennsylvania and msnbc.com columnist, notes that the findings are limited by the fact that the families willing to document their experience in a survey tend to be those with a Down syndrome child on the healthier and more high-functioning end of the spectrum.

Still, he says the study provides powerful data, and an important perspective that has been hard to hear, but may not change people’s minds.

“Even though society has learned more about what Down syndrome can do, it still turns out that some prospective parents won’t be willing to accept that story,” he says. “I’m not saying it’s not important to tell that story or explore impact on families or what it can mean for the child themselves, but it may not have a huge impact in a society that’s so obsessed with perfect children, competition, better performance and plastic surgery enhancement.”

Whether they believe it or not, Skotko says, “These results will be quite shocking to many Americans, who might have some misperceptions about what it means to have Down syndrome. Family members have spoken and have said life is positive with Down syndrome.”

Kimberly Hayes Taylor is a health writer based in Detroit. A former staff writer for newspapers including The Detroit News, Minneapolis Star Tribune and The Hartford Courant, she’s also written for magazines such as Essence, Black Enterprise and Decisive. Her latest book is “Get It Up: The Ultimate Guide to Overcoming Erectile Dysfunction.”

© 2011 msnbc.com.

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Join us to:

• to have fun
• play games
• meet other kids with brothers and sisters with special needs
• share thoughts and feelings

Young children group in Wayne: 2nd Saturday morning of every month from 9:15-10:30am for children 4-7. Location is 987 Old Eagle School Road, Suite 712, Wayne.

Ongoing group in Wayne: 2nd Saturday morning of every month from 10:30am-12:00pm for children 8-12. Same location as above.

Group facilitator: Dale Fisher, LCSW

Cost: $35.00

For additional information, please contact Dale Fisher at 610-668-8890 or 610-547-6947 (cell) or email dalesfisher@gmail.com.

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Published: July 29, 2011

Early in the evening of June 25, 1995, hours after the birth of his first and only child, the course of Dr. Alberto Costa’s life and work took an abrupt turn…read more about this doctor and his quest to find medication to improve cognitive ability in people with Down Syndrome.

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For 32 years the people of Media have hosted a five-mile race to raise money for charity.  And for several years, this bothered West Chester’s John Manion.

“I thought, ‘Why don’t we have a race?’” Manion said.  “I was asking everyone, and they all said, ‘I don’t know.  Do it.’”

And hence, the Dub C 4 Miler was born.

Manion spent the next six months organizing a race, and to his surprise, people showed up.  A lot of people.

“We had 550 people at that first race, and that’s when I thought to myself, ‘Now we’ve got something,’” Manion said.

The next year was bigger, 700 racers raised $3,500, and this year the Dub C 4 Miler raised $5,000.

“It just keeps getting stronger,” Manion said.  “I think its becoming part of the fabric of West Chester.  People say, ‘Yeah, I know West Chester.  I run in that race.’”

This year all the proceeds went to the Chester County Down Syndrome Interest Group that provides support and education for families with children that have Down Syndrome.

“It’s a really cool, benevolent cause,” Manion said.  “Having a child with Down Syndrome comes with a lot.  The society helps people know what to expect, and they provide a support system.”

“The president [of the run] contacted us about it, and we couldn’t turn it down,” said Chester County Down Syndrome president, Elaine Scott.  “It says a lot about the runners and the people in the community the way they seek out the kids during the race.”

During the race, 25 kids and 25 adults with Down Syndrome manned the water stations providing much needed support during this year’s extremely hot race.

“It’s a feel good situation,” Scott said.  “Last year, we had a runner who finished the race run all the way back to a water station just to say thanks to one of our kids.  This year he was back, and as he came up to the water he pointed at the same kid like ‘you, I want my water from you.’”

“Everyone really goes out of their way to say thanks in the present,” said Julie Powers, treasurer of the group and mom of a child with Down Syndrome.  “People get fired up.  It never ceases to amaze me.”

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