What's New?

May 2 Rally In Harrisburg
On Wednesday, May 2, 2012, Self Advocates and Family Alliance, Vision for EQuality, The Pennsylvania Waiting List Campaign, The Arc of Pennsylvania, Self Advocates United as One, Philadelphia Police and Fire Association for Handicapped Children, Pennsylvania Association of Rehabilitation Facilities, Pennsylvania Community Providers Association, Pennsylvania Advocacy and Resources for Autism and Intellectual Disabilities, and many other Self Advocate and Family organizations across the State will be holding a Rally in Harrisburg to stop the proposed Governor’s Budget that will cut services to citizens in Pennsylvania.
  • There is NO Waiting List Initiative in the proposed budget.
  • NO funding for our High School Graduates, aging caregivers, or people and families who need support.
  • Autism funding is cut back and NO increased funding is offered.
  • STOP the Block Grant and restore the proposed 20% cut to Base funding.
  • All cuts to all services must be stopped.
  • We reject state institutions as a residential option for our family members.
  • Send in your story to share with legislators.
Please visit Vision for EQuality website to find out more information about the Rally In Harrisburg on May 2 and what you can do to stop the proposed Governor’s Budget cuts:
http://www.visionforequality.org/

State Budget Crisis Mother's Day Rally
State Budget Crisis for People with Intellectual & Developmental Disabilities
  • Rally Location: On the Steps of the Doylestown Courthouse, 55 East Court Street,
       Doylestown, PA 18901
  • When: Mother’s Day Saturday, May 12th  10:00am – noon
See attached flyer for additional information

Free IEP Clinic in Norristown
NEACDA is holding an IEP clinic on Saturday, April 21st at the Norristown Public Library. There are 45-minute time slots between 10:00 a.m. and 1:00 p.m. (ending at 2) that you can choose to speak with consultants regarding issues specific to your child's IEP or questions relating to their education. Please respond to this email to register and provide what time of day works for you, your phone number, general idea of your concern/question and we will contact you to gather more information for intake purposes and to confirm a time slot.

Register by phone at 610-630-9142, or contact Jill at jillhouseal@verizon.net. Include your name, phone number, email address, a suggested time, and a suggested topic.

Children’s Hospital of Philadelphia’s Trisomy 21 New Parent – Family Reception
The Children’s Hospital of Philadelphia’s is sponsoring the Trisomy 21 New Parent – Family Reception on April 28th. The New Parent – Family Reception will provide guidance to families with children under 2 years of age, to assist them on this new journey. Registration is required, please click on this link for additional information and to register.

The Forever Friends Show
Forever Friends is a unique and exciting new inclusive children's show targeted for kids ages 2-7. It stars Chris Burke, the actor with Down syndrome best know as "Corky" on the hit ABC-TV series "Life Goes On" and Joe and John DeMasi. Forever Friends brings a message of love, friendship and inclusion as children follow Chris, Joe and John, their feline friend "Feedback" and their talking computer "Newton" on their various and fun filled adventures as they sing along, sign along, celebrate abilities and teach kids that we are all more alike than we are different. The show can be viewed here for free at www.ForeverFriendsShow.org

Sign a Petition to allow some disabled students to play for 1 year past the current age limit.
Eric Dompierre (my son), a 19 year old junior with Down syndrome who attends Ishpeming High School, will be ineligible to compete in football and basketball his senior year because of age restrictions set in place by the Michigan High School Athletic Association.

This rule is the only rule that the MHSAA does not allow itself to waive. Changing this rule will enable a small number of deserving students who have experienced a hardship due to a combination of intellectual and physical disabilities early in life to play a full four years of high school sports. This would put Michigan in line with 23 other states who currently allow waivers to their maximum age rule.

Embarrassing these students by unnecessarily sitting them in the stands benefits no one. It shouldn't require a large number of people demanding that they do the right thing, but that may be what it takes. Please sign this petition and show your support for Eric and other student athletes like him.

If you live in Michigan, please also contact your local school board and urge them to support this petition and the proposal to allow waivers to the age limit so that Michigan joins 23 other states in allowing certain athletes with both intellectual and physical disabilities to play a full four years of high school sports. You can view this proposal and the rationale behind it at IshpemingSchools.com.
Happy World Down Syndrome Day
To learn more about World Down Syndrome Day, visit http://www.worlddownsyndromeday.org/.
Special Ed Bill Update
Call or e-mail your state senator immediately and ask for a vote in favor of Senate Bill 1115. Even in this tough year, we are close to making historic progress for children with disabilities. SB 1115 is our reform legislation for special education funding and accountability. The bill was recently approved by the Senate Education Committee in a unanimous vote. We are now getting close to final passage in the Senate, with two crucial votes expected during the week of March 26. For a detailed update, go to http://www.reformspecialedfunding.org. You can find the home district office phone number and e-mail address for your state senator here – http://www.legis.state.pa.us/cfdocs/legis/home/findyourlegislator/#address.

TALKING POINTS for calling the home district office of your local state senator:
 
• Please vote for Senate Bill 1115, the special education reform bill, when it comes up for a vote this month.
 
• Senators Browne and Dinniman are the lead sponsors.  The bill has 30 cosponsors and Senator Piccola, Chair of the Education Committee, is also supporting the bill.
 
• I am asking you to support reform of the state funding and accountability system for special education.
 
• This legislation was approved 173-25 by the full House of Representatives in 2010, and has now been re-introduced as SB 1115. The bill does not call for any new funding in 2012-13, but fixes the system for future years.
 
• The current funding system is broken, is unfair, and does not provide enough resources for special education in the right places.  The broken system sets the number of students eligible for state funding for special education at 16% regardless of whether the school district has fewer or more students receiving special education.  It also does not focus the funding on strategies that have a track record for improving student performance.
 
• The school districts you represent need support for special education, and must be held accountable for results.
 
• I have personal experience with how this broken system hurts children with disabilities and all students. (Describe your experience.)
 
• Thank you for supporting this important issue and voting for SB 1115 when it comes up in March.
 
Thank you!
2012 Lose The Training Wheels Camp
We are pleased to announce that we will be hosting a Lose The Training Wheels camp again this year. This year's Camp will run from June 18th till June 22nd. The Camp location this year will move to the Notre Dame Academy in South Villanova as the Agnes Irwin School was unavailable due to ongoing remodeling. Because the Notre Dame Academy is a larger facility we will be able to host 25 campers in total, or 5 per session, with 5 sessions each day. The per camper cost will be the same as last year--$200.

There will be one major change from last year's Camp--the minimum age of each camper was raised by LTTW to 10 years old from 8. Hopefully this will not be a problem--but if you have any questions or concerns, please let us know.

In order to gauge the interest level in this year's Camp we are asking anyone that has a genuine interest in attending to please email me directly at michael.evenosky@delcodsig.org. Once we have an idea as to the number of campers we will be sponsoring we will forward information over to all interested families. Patty White has graciously volunteered to chair the Camp again this year and we are very fortunate to have her experience and dedication ensuring another successful LTTW Camp! We also have a flyer detailing some more information about the Camo that we urge you to download. Thanks!
Educational Advocacy Program
We are very excited our Educational Advocacy Program in partnership with the Arc of Delaware County and we are pleased to provide additional details about the plan and hopefully clear up any misconceptions about what the Program provides to our members. The Educational Advocacy Program will provide the following services:

  • Educational Advocacy for our member families of Delaware County with an IEP or 504 Plan
  • Covering children from Preschool through Graduating Seniors
  • Up to six hours of service at no cost to five of our families
  • Providing IEP Reviews, IEP Development Consultation, Classroom Observation, Inclusion Consulting, FBA & Positive Support Plan Collaboration, Education Placement Consulting, Mediation Consulting
If you are interested in participating in the Program, you are encouraged to do the following:

Thank you!

Trisomy 21 Spring Newsletter
Download the Spring 2012 newsletter published by the Trisomy 21 Program at CHOP.

Delaware Cheerleaders Embrace Special Teammate
Brian Taff from ABC News recently published a story on the 6ABC news site that featured Rachel Rhea from Newark High School. Rachel has Down Syndrome, a fact that in many places might have meant she wouldn't have gotten a chance to be on the high school cheerleading squad. But THIS high school team saw that this girl has skills. "We watched her do one of her cheers," said cheerleader Kristin Hilliard. "We saw how fast she does cheers and how she picks them up and then we brought her to the coach." And the coach brought her on the team, and, as it turned out, into something like a family. "The whole school has embraced her as part of our team," coach Jacqui Fournier told Action News. "She's just one of the girls with the rest of 'em." Read the rest of the story and view the video on the 6ABC website.

S.N.A.P. of Delco Bowling Party
The owners of MITSUBISHI of Springfield, Pa & STARR LOANS AUTO CENTER of Springfield and Folsom, Pa. are sponsoring a Bowling Party for S.N.A.P. of Delco on Friday March 16th from 7PM until 9PM at the AMF Conchester Lanes. This FREE EVENT will include 2 hours of Bowling, Pizza & Drinks and Shoe Rental. Bumpers will be available if requested. Please R.S.V.P. to specialneedsactivepeople @ yahoo.com by Monday March 12th. Download the flyer here.

Webinar– Enhancing Student Services to Provide Accessibility in Post- Secondary Settings
Eastern Institutions of higher education must comply with the Section 504 of the Rehab Act and the ADA to provide academic adjustments, including auxiliary aids such as AT.  The Southwest and Great Lakes ADA Centers will present information via a webinar on Wednesday February 29, 2012 from 2:00 to 3:30p.m. on their project to develop quality indicators on AT for post-secondary accessibility and report on the data collected from this effort.  Presenters will also provide information on processes that disability services offices can institute to ensure that students with disabilities receive appropriate accommodations.  This is a free webinar open to all.  If you would like to receive .1 IACET CEUs via RESNA, there will be a $16 fee. 

To attend this webinar, please register at:  http://www.adaconferences.org/RESNA/  Access information for the webinar will be provided when you register.

For more information about this webinar and other Webinars scheduled for the FY 2012, go to http://www.resnaprojects.org/statewide/webed.html

Film Festival and Arts Exhibit
Kick-Off Intellectual & Developmental Disabilities Month with The Arc of Delaware County and the Delaware County Office of Intellectual Disabilities with a Arts and Film festival, Saturday, March 3rd, 2012 2-6 PM at the Delaware County Community College sponsored by iradiophilly.com. Featured performers include Disability Rights Singer and Songwriter Johnny Crescendo, Contemporary composer and pianist Willy Potts, Actors from Arts YOUniverse and Verve Vertu, Films by The Sprout Touring Film Festival www.sprouttouringfilmfestival.org, Art Exhibitors including painters, jewelers, pottery and more! Download these brochures for more information: Film Festival Information , Performers Information.

Beef And Beer for the T21 Club of the Delaware Valley
The T21 Club of Philadelphia will hold their annual Beef and Beer on March 24th, 2012 from 7P.M to 11P.M.. This fundraiser is being held at St. Katherine of Siena Parrish Hall; 9738 Frankford Avenue Philadelphia, PA 19114, to support the T21 Club of the Delaware Valley. Good food, good music, wonderful raffle items--a great time for all. Each ticket is $30 when purchased in advance. If tickets are still available they will be $35 at the door, the night of the event. Checks and money orders can be made out to:
T21 Club of the Delaware Valley
1118 Grant Ave
Philadelphia, PA 19115

You can pick up your ticket(s) at the door. For more information contact Jenn Bonawitz at 215-990-8730 or T21club@comcast.net.

2012 Night at the Phillies
Jack Malone has graciously volunteered to handle this year's Night at the Phillies game. This year's game will be Monday April 30th at 7:05 PM versus the Cubs. Tickets are $38 per person, but children 3 and under will not require a ticket as long as they can sit on a lap. There are 250 tickets available as well as 4 wheel chair and companion seats available. We will be sitting in sections 20 and 207 (same as last year). This will also be Dollar Dog Night, along with free T-Shirts on a first come basis. Additionally one child 7 years and older with Down Syndrome will be selected to throw out the first pitch as well as win 4 VIP passes. This is always a fun night and we look forward to another fantastic night. Please contact Jack Malone at 610-876-0467 or by email at malone83@comcast.net.

Dr. Mom and the iPads Blog
Here's an interesting Blog I encourage everyone to visit. Geralyn Arango, a Mom, a Professor, a passionate iPad user, and now a blogger blogging about the innovative attempts to incorporate an iPad to assist her son Nicholas and his IEP team, is hoping our Group can provide some feedback. Her son is 13 and has Down Syndrome, and has developed an affinity towards the iPad. Please give Geralyn's blog a read and feel free to post comments or ask questions, especially if you have ever considered incorporating these wonderful tools into your child's educational plans.

Bryn Mawr Rehab Hospital Project SEARCH Program Open House
Bryn Mawr Rehab Hospital is accepting applications for its second PROJECT SEARCH class. An open house outlining the program will be held on Tuesday, April 26, at the hospital, 414 Paoli Pike, Malvern, PA, beginning with registration at 4:30 p.m. The Open House program will begin at 5 p.m.

The Bryn Mawr Rehab Hospital Project SEARCH program welcomed its first group of interns in October 2010. The program teaches employable skills to adults with disabilities who want to enter or re-enter the workforce. Through Project SEARCH, interns receive classroom education, as well as supported internship rotations in order to learn skills and gain experience that will allow them to obtain competitive employment.

The April 26 Open House will be held at Bryn Mawr Rehab Hospital, 414 Paoli Pike, Malvern. During the Open House, individuals will learn more about the program and will have the opportunity to submit applications for available internships. Representatives from Bryn Mawr Rehab Hospital and the Office of Vocational Rehabilitation will be available to answer questions and to help with the application process. To register for the Open House, please call 1.866.CALL.MLH

Camp PALS 2012
Camp PALS mission is to offer young adults with Down syndrome the best week of their summer while providing a variety of experiences, new opportunities, and a chance to become more independent. The dates for next year's camp are June 17-23, 2012 at Cabrini College. The camper application will be available at 12:01am on January 1.

Camp PALS has a variety of financial options available and you are encouraged to contact them at directors@camppals.org if you have any questions. Or visit the website to learn more at http://www.camppals.org.
 
Works for Me Training
Temple University is hosting free training seminars for people with disabilities and families. These seminars will provide information related to facts about employment and people with disabilities, talk about cash benefits and healthcare benefits, explain the basics about Work Incentives and Ticket to Work, introduce resources for people with disabilities who are interested in working and provide you with opportunities to have your questions answered by experts from Work Incentives Planning Assistance (WIPA) offices, the Office of Vocational Rehabilitation and the Employment Network. There will also be concurrent session for self-advocates/adults with intellectual disabilities. To learn more visit this page on the Temple University website.

Updated Health Care Guidelines
The NDSS has published an updated set of health care guidelines from the American Academy of Pediatrics. The Down Syndrome Health Care Guidelines follow and individual’s development from birth through adulthood and provide information about potential health concerns at each stage. For more information please see the NDSS web site.  

Interesting Story
Interesting story concerning the federal government's hiring policy. Visit http://www.whitehouse.gov/blog/2011/10/14/hiring-people-disabilities to read more about this unique policy.
 
See Harry Connick Jr in NYC
Suzanne Nagel is putting together a really great package deal to see Harry Connick Jr in his Broadway musical "On a Clear Day, You Can See Forever". This show will take place Saturday March 24th. The package deal includes transportation and plenty of tasty snacks. Download the flyer for more information including Suzanne's contact information.

Marple Newtown Swim Team's Special Olympian Is a Champion In Water
Ronald Nagel, son of Mr. and Mrs Nagel, is featured in this inspiring piece published in the Marple Newtown Patch. The article talks about his life long love of swimming and his achievements with the Marple Newtown Swim Team. You can view the entire article here.

Main Line Sibshop
Brothers and sisters will have the longest lasting relationship with a sibling who has a disability – one that can easily exceed 65 years.   During their lives, they will experience most of the unique concerns and joys their parents do.  But few siblings of kids with special needs ever have a chance to talk about their issues with others who “get it” – until now.
 
Siblings of kids with special needs from the Main Line area are invited to join a program that is just for them called Main Line Sibshop.  At Main Line Sibshop, they’ll have a chance to meet other kids whose brothers and sisters have special needs and talk about the good and not-so-good parts of having a sibling with a disability.  Most important, they’ll have fun!
 
Sibshops are an exciting support, information, and recreational opportunity for siblings ages 8 – 11.  The fall 2011 Main Line Sibshop will be held at St. George’s Episcopal Church, 1 W. Ardmore Avenue, Ardmore (corner of Darby Road and Ardmore Avenue).  The fall Sibshop meets for three weeks on Sunday afternoons from 2 – 5 pm on November 6th, 13th and 20th.  Facilitators are Marilyn Berberich and Catherine Mallam, both of whom are certified school counselors and have been trained by the Sibling Support Project based in Seattle, WA.  Fee for the three-session program is $75.   For more information and to register, email Marilyn Berberich at mainlinesibshop@gmail.com.  Registration is due by October 25, 2011.
 
To learn more about Sibshops and the Sibling Support Project, visit siblingsupport.org. 

 
CHOP New Parent Program
According to Brooke Goodspeed, “Hearing unexpected news is a frightening and overwhelming experience”. She and her husband, Jonathan, experienced this first hand after learning their second child had Down syndrome shortly after his birth. In an instant they found themselves thrown into a world of unknowns for which they were not prepared. “Pouring hours into reading books and talking to medical professionals was helpful in shaping our understanding of how best to pro­vide for our new baby,” Brooke said. “However, reaching out to families that had been in our same shoes was like a much needed hug. Someone saying ‘hang on, I’ve been there’ is the com­fort sometimes needed most during the early adjustment period. The comfort of understanding support, information, and advice-from someone who under­stands your perspective first-hand.” This inspired Brooke and Jonathan to work with the Trisomy 21 Program at CHOP to develop the New Parent-Family Reception. To register, complete the New Parent-Family Reception registration form by clicking on the following link: Registration Form. When you are finished, click Submit! For more information call or email The Trisomy 21 Program at: Phone: 267-426-5283 Email: trisomy21@email.chop.edu

Special Needs Tax Credit Bill
A program catered towards the junior (5-12 years of age) age bracket heads into its third season with strong momentum behind it. While a similar program existed prior to that, it was disbanded for a year before being restarted three years ago. The program was small when it was re-started: 3-4 children participating on a given week. Last year however things took off: 10+ children were common each week, allowing for a ton of group fun. Team uniforms and pictures then capped the season by year end and everyone involved is very excited for the upcoming season! Read more about about this program in our News Section.

"21 ACT" PACKAGE
The 21 Research Resource Act will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank. These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research. This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders. Follow this link to the NDSS website for more information and to act.

The House 2012 Federal Spending Plan is Devastating for People with Disabilities and Will NOT Reduce the Deficit
The Arc.org, a national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families, reported that last week, House Budget Committee Chairman Paul Ryan (R-WI) released his Fiscal Year 2012 spending plan (known as a budget resolution). This plan pulls the plug on people with disabilities, seniors, students, and the middle class to pay for tax cuts for millionaires by targeting Medicaid, Medicare, Discretionary Programs and Health Care Reform. If this changes are allowed to proceed it is believed that people with disabilities could be denied:

  • health insurance coverage
  • home and community based services
  • supportive housing
  • job training
  • education
  • transportation
  • and much, much more

The House of Representatives will vote on the Ryan budget plan this Friday, April 15. We must let them know that this plan is just plain wrong for America. Please call your Representative this week. Call toll free: 1-866-922-4970. If the line is busy, please enter your zip code in the “call now” box located on the Arc.org's website to obtain the District Office phone number.

Below is a sample of what you can say to your Representative:
  • I am a person with a disability or parent/caregiver of a person with a disability. (Briefly describe your situation, if you like.)
  • The Ryan budget plan will take funding from people with disabilities to pay for tax cuts for the wealthiest Americans. And it does almost nothing to reduce the federal deficit.
  • A Medicaid block grant would be devastating for me/my family member.
  • Please vote against the Ryan budget proposal.

For more information please visit this web page setup by the Arc. Thank you!

Interesting Blog Post
Interesting Blog Post about a boy with Down Syndrome and his unexpected revelations to his mother as observed by casual onlookers. Click here to read the post.

DelcoDSIG News

April Monthly Meeting
There will be no April Monthly Meeting as we will be hosting a Saturday Brunch during the month of April. Stay tuned for details!
New Online Email Sign Up
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