What's New?

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.

Meeting with Deputy Secretary Friel
Vision for EQuality will be hosting Kevin Friel, the new Deputy Secretary of the Office of Developmental Programs on January 20, 2012 from 10 to 12 PM here at Vision for Equality. This is an opportunity for people with disabilities, family members and caregivers to meet Mr. Friel and express their concerns for the future. Deputy Secretary Friel is most anxious to meet with families and to hear from them directly their individual stories.

Many changes are happening in the system. People are at risk of losing important services possibly their waivers and in some cases their group home. People are going to state institutions. Decisions are being made at the state level without the input of families and self-advocates. The impact of any change will affect those we love.

The Deputy needs to hear what it is like to be a caregiver and how important services and supports are to your family member and to you.

He needs to hear how devastating it will be if you lose your services or if supports are not available in the community when you can no longer carry out your care giving role. He needs to hear how devastating it will be if these services are lost, how it will affect you and your family. It is also very important for him to meet with families who wait without services or who live in group homes and their services are being cut.

Please circulate this information to any interested parties.

Call Kathy Foy at 267-773-5285 to register for this important event.
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

Oral Health and Down Syndrome
The NDSS will be hosting an encore presentation Monday, November 14 from 12:00 PM - 1:00 PM EST, from earlier this year titled “Oral Health and Down Syndrome” with Jessica De Bord. This presentation will describe oral characteristics that are common in people with Down syndrome, ways to prevent dental disease, and tips for finding a dentist and having a successful dental visit. Jessica De Bord is an Assistant Clinical Professor of Pediatric Dentistry at the Herman Ostrow School of Dentistry of USC. Dr. De Bord is the oral health faculty for the Leadership Education in Neurodevelopmental Disabilities at the USC University Center for Excellence in Developmental Disabilities at Children’s Hospital Los Angeles. To register for this webinar please visit the NDSS website at https://www2.gotomeeting.com/register/863082050 .

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.
 
PEAC 2011 Inclusion Conference
The 2011 Inclusion Conference, hosted by PEAC (Pennsylvania's Education for All Coalition), is a great opportunity to learn more about best practices in education and advocacy, early intervention, and lots of opportunities to network! Help us spread the word to parents, family members, students, self-advocates, higher education, and school professionals about this event.

Conference highlights include:

* Internationally renowned inclusion keynote speakers: Norm Kunc and Keith Jones!
* More than 60 exciting, best-practice sessions!
* Evening networking event with entertainment by Alan Holdsworth a.k.a. Johnny Crescendo!
* …and much, much more!!!

As members of the Delaware County Down Syndrome Interest Group, we are eligible to register as a "group" and enjoy the group discount. If you are interested in attending, please email us at welcome@delcodsig.org. We will coordinate your registration. Visit www.paedforall.org to learn more and register!  
 
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

Temple's Mini Course Lecture Series on Disabilities
Institute on Disabilities at Temple University presents The Mini Course Lecture Series on Disabilities. Admission is FREE and registration strongly recommended.
                                                                          
November 14, 2011 
1:30 - 4:00 PM
Temple University Main Campus
Student Center, 1755 N. 13th St. Philadelphia, PA  19122

TOPIC:
 Communication, Self-determination, and Community:  
 AAC Strategies to Support Transition  with special guest lecturer David McNaughton, PhD       
 
Dr David. McNaughton is on faculty in the Special Education program at Penn State University.  His teaching and research interests include employment for individuals with complex communication needs, and collaboration skills for working with parents and educational team members. He is a co-editor, with Dr. David  Beukleman, of Transition Strategies for Adolescents and Young Adults Who Use AAC (Brookes Publishing).

A social and networking evening for AAC and AT professionals follows the presentation.

For early registration, email:
http://disabilities.temple.edu/programs/miniseries/
 
Down Syndrome Association of Los Angeles Casting Call
The Down Syndrome Association of Los Angeles has a casting liaison program to assist film-makers with casting individuals with Down syndrome in television, film and new media products. You may be familiar with some of our work. We assisted the casting directors of GLEE in finding Becky Jackson (Lauren Potter) and Jean Sylvester (Robin Trocki). Also, check out Jamie Brewer on the new FX series AMERICAN HORROR STORY airing Wednesday, October 5th, for adult audiences. The casting "breakdown" is below.

Adult Male with Down syndrome age 18 to 30. Must have fairly clear speech to deliver lines and be able to memorize.

This independent film project will shoot in New York starting end of October. The project will include a 40 minute feature film and a second 50 minute documentary on the young man with Down syndrome cast in the feature. The feature is a love story between a female caregiver and the young man with Down syndrome she cares for.

Auditions are expected to be held in New York, in the Union Square area beginning Friday, September 30 and Saturday, October 1, 2011. Transportation is at the actors expense. Filming will take place in the New York area starting the end of October and should run about 10 days, plus.

Submit photo via email of male actor 18 to 30 with Down syndrome; along with name, date of birth and any film or acting experience. Also, please provide contact parent/caregiver's name, cell phone and email address. Send to Gail@dsalal.org ASAP to forward to filmmaker. All submissions to Gail will be considered, you do not need to first register for the DSALA casting liaison service, but are welcome to for future project consideration.

All actors in New York registered with the casting liaison service have already been submitted for consideration.

Submission to Gail Williamson Gail@dsala.org

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.

Is your Child Considering College?
Diane Perry, a long time member of our group and a tireless advocate for our children is collecting information to see how students / parents feel about going to college. Please take a few minutes to fill out the survey below. Your answers are confidential. The link to the survey is located here http://www.surveymonkey.com/s/F3QGNN2. Thanks!

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

Queen of Hearts Casino Night
This black-tie optional affair hosted at the Overbrook Country Club will feature an open bar, delicious appetizers, local celebrities, Texas hold’em games, a high end raffle, and more!! The cost of tickets is $75.00 per person. All proceeds raised from this evening will benefit the Delco DSIG group (a nonprofit 501c3 organization) and its families through education initiatives, training, social outreach. Join us February 4th, 2012 at 7PM.

Download the Press release for Queen of Hearts night for more information and “like” us on Facebook at Delco DSIG Queen of Hearts Casino Night. Or contact Katrina Stafford at katrina.stafford@delcodsig.org.
Valentine's Day Party
Our Annual Valentine's Day Dance will be held Wednesday February 15rth at the Willows this year. Stay tuned for more information.
2012 Walk for Our Kids
Our Annual Walk for our Kids will be held Saturday March 17th at the Springfield Mall from 8 AM until 10 AM. We will post more information related to the 2012 Walk soon.
New Online Email Sign Up
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