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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Each ticket is $30 when purchased in advance. If tickets are still available on the night of the event, they will be $35 at the door.

Checks and money orders can be made out to T21 Club of the Delaware Valley and can be mailed to 1118 Grant Avenue, Philadelphia, PA 19115.

Tickets can be picked up at the door.

Would you like to save $5 OFF your ticket? If you are not aware, the T21 Club has been making “welcome bags” for families who have just delivered or adopted a baby born with Down syndrome. We would like to include your name in our welcome bags by asking you to bring a BRAND NEW BABY BLANKET to the Beef and Beer – and for helping other families, we will take $5 OFF your ticket price!

Also, to support those who bring friends and family to the event, you will receive one free ticket with your purchase of 19 tickets to this event. (20 tickets will reserve you two tables.)

If you are unable to attend please consider purchasing tickets for our 50/50 of only one dollar each chance. You do not have to be present to win.

If you are a business owner, please consider making a donation and we can discuss ways that the T21 Club can help you advertise your business.

Like all of our events, the proceeds will remain in the Down syndrome community in the tri-state area. Additionally, the diversity of individuals in our society enriches the lives of the people in every community. We demonstrate this on a large scale by engaging communities in events and activities that expose them to human diversity in ways that are both fun and fulfilling. Ultimately, we foster communities of acceptance, equality, and compassion.

For more information, please contact Jenn Bonawitz, Director – T21 Club of the Delaware Valley, at 215-990-8730 or visit
www.t21clubofthedelawarevalley.org.

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Seating will be located in the following  areas:

• Pavilion Deck (sections 308-309) at $28 per ticket
• Pavilion (sections 201-205) at $30 per ticket
• Pavilion (sections 206-207) at $38 per ticket

To buy tickets, please visit www.phillies.com/downsyndrome. Please do NOT forget our promotion code DSAN. Place your orders by March 30, as tickets are subject to availability.

HOW WE ALL BENEFIT IF YOU PURCHASE YOUR TICKETS WITH THE SITE/CODE ABOVE:

- It insures we are given time for a video to be shown before the game, which will be advocating for Down Syndrome.

-One of our loved-ones who is 7 years or older and born with DS, will throw out the first pitch of the game, PLUS 4 V.I.P seats, and a pre-game tour.

-Based on the ticket sales we are given funds back to support our cause, in our own back yard.

-The seats they have reserved, are relatively close to each other, so it is easy for you to meet up with a FaceBook/Twitter friend and give them a hug.

- Because of the great turn out, we had last year, it is safe to say that was a factor for having the Phanatic stop by our DS Awareness Day at the Philadelphia Zoo this past fall.

Please contact Vanessa Mapson in the Group Sales Office at 215-463-5000 ext. 5306 or additional help for groups larger then 25 supporters. If you already have tickets for this game, we were told you can apply them to our group, you simply have to call before the deadline.

For your convenience it is also dollar dog night!

Because of how many t-shirts we have left over each year, we are going to limit the sizes and amount of shirts we order. We are hopeful you will understand, because they are using funds we could use for something else, instead of having boxes of shirts sitting in my shed. Therefore, the shirts will be first come first serve.

Also, if you are coming with a loved-one 7 years or older and born with DS and would like them be entered into a drawing to throw the first pitch of the game and 4 V.I.P seats, please email T21club@comcast.net with the subject title “PITCH” and all your contact information by
April 1^st, 2012.

If you have any questions about this game or the T21 Club of the Delaware Valley, please contact Jenn Bonawitz 215-990-8730 or www.t21club@comcast.net.

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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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Bounce U address and phone number: 882 Springdale Drive, Exton, (610) 363-6610

Please RSVP to board@ccdsig.org and include how many people are attending the event, as well as how many will be bouncing.

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Date: Thursday, January 19th

Time: 7:30- 9pm

Location: East Goshen Township Building – Board Meeting Room, 2nd floor – 1580 Paoli Pike, West Chester, PA

Please RSVP to Heidi Slater at heidi_huseby_slater@yahoo.com to properly plan for handouts, set up, etc. We hope to see you there!

Note: This same workshop will be offered by the T21 Club on January 23rd, from 6:30pm – 8:00pm, at Potential, Inc. (638 Newtown Yardley Rd., Suite 1F.) Free babysitting is being provided. To RSVP for the T21 Club’s workshop, please email info@potentialinc.org or call 215-579-0670.

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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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Date:  Thursday, November 10th @ 7:30pm (lasting until approximately 9pm)

Location:  East Goshen Township Building – Board Meeting Room, 2nd floor, 1580 Paoli Pike, West Chester, PA

Guest Speaker: Bruce Sham, CLF, First Financial Group, www.specialcareplanning.net

Please RSVP to Heidi Slater at heidi_huseby_slater@yahoo.com or board@ccdsig.org.

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Location:

Elaine Scott’s house
837 Cottonwood Drive (at the intersection of Rt 352 and King Rd)
Malvern, PA

Please RSVP to Elaine at (610) 889-3151 or to the CCDSIG at board@ccdsig.org or our hotline at (610) 889-0291.

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