Enewsletter 30-Jul-2007
 
 

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Transitions and IEP stuff 

  1. The MCDSIG Transition Meeting – We had our transition meeting last week.  DSIG members presented each transition and shared helpful hints and war stories.  Have no fear if you missed this great meeting.  Click on the transition below to view the handout material:

Starting Early Intervention (EI)

The 3 Year Old Transition (going from EI to the IU)

The School Age Transition (going from the IU to the School)

  1. Great Website - Education Law Center and the PA School Reform Network is a non-profit legal advocacy and educational organization, dedicated to ensuring that all of Pennsylvania's children have access to a quality public education.  Their site is loaded with info.  I want to highlight 2 publications written by lawyers in everyday language that are packed with information and kept up to date:

The Right to Special Education in PA

The Right to Early Intervention for Infants and Toddlers and Their Families in PA

  1. Pop-Up IEP – This website has a cool Pop Up tool that provides answers and the law associated with any roadblocks you might face during your next Individual Education Program (IEP) meeting.

  1. Other sites – we have mentioned these sites before or have them in our useful link section, but they're so good, I will highlight them again:

·        Wrights Law

·        Least Restrictive Environment (LRE) and Educational Placement for Students with Individualized Education Programs (IEPs)

·        Gaskin Settlement  

Traveling/Places to Go 

  1. Free Park National Park Pass

A great benefit from the National Forestry & Wildlife Division. You may ormay not know about. It is a free lifetime access pass for any person with a disability or for the caregivers of a person with a disability. It allows access to ALL national parks for free and 50% discount on parking and camping.

All that is required is a letter from the physician stating the disability and you take it to your local National Forestry & Wildlife Division to get the pass. Each pass will admit up to 4 adults and children under 16 are always free. This link answers all the questions: http://store.usgs.gov/pass/access.html

  1. Generations Farm

Is a local farm that offers a program associated with is called Personal Ponies, LTD.  Sue Gemmil, a MCDSIG member and coordinator of the DS playgroup, recently visited the farm and described her experience below:

"You can take a group or go alone.  When we arrived they asked each parent to sign a waiver.  Then when the group all arrived we went to the barn, they have a sleigh with a horse made of hay that you can take pictures sitting in and a tractor.  Once in the barn they allowed the older children to lead the ponies from their stall out to the riding area.  There they were kind enough to set up three umbrellas to keep the sun off since we went when it was so hot.  They have buckets of brushes for the children to brush the ponies, or they could walk the ponies around the yard.  Then they saddled up one pony for the children to ride.  I had Connor (5) with me and others had older siblings also so they got the big horse out to ride. After we washed up in the barn we had our packed lunches at tables they set up for us in the shade.  Every child was given a small stuffed horse!  They do not push for donations.  They simply want the kids to have a great time"

The farm contact information is below:

Dotty Bertholf @ Generations Farm
1159 Horsham Road
Ambler, PA  19002
215-542-0386

 Photos from the farm:

Workshops/Volunteer Opportunities

  1. Advocacy Workshops

 Date:  October 23, 2007

Time:  10:00am-3:00pm

Place: Vision for Equality, Cast Iron Building, Philadelphia, PA

Sessions are as follows: "Different Advocacy Approaches" will teach you to increase your awareness of the different approaches for group advocacy and the advantages and disadvantages of each. You will also understand the factors that need to be considered in deciding which advocacy approach to take. "Advocacy With State and Local Governments" will teach you how to understand the organizational structure and decision-making stages of state and local government. You will also understand what information and approaches are important in trying to influence policy makers.

To enroll or for more information, please contact the Disability Advocacy Support Hub (a project of the Disability Rights Network of Pennsylvania) at 866-915-3274 (877-375-7139 tty) or send an email to dash@drnpa.org

  1. MARC positions available: 

Advisory Panel Position: Least Restrictive Environment
The Least Restrictive Environment Advisory Panel, which is a creation of the Gaskin litigation settlement, has a position available. There is no guarantee of appointment, but if you are interested, then please express your interest ASAP. The person must be committed to inclusive practices and must be prepared to commit to two-day meetings about four times per year, in addition to time for conference calls, reviewing materials, etc.

 Advocacy board position is open.  This would be a good fit for one of our parents.

 If you're interested in serving, please email Paul Stengle at PaulStengl@aol.com.  .

  1. Buddy Walk Info and Volunteers Sought

Below is a message from Linda Cartwright, a MCDSIG member and CHOP Buddy Walk coordinator,

 Dear Friends,

It’s July and you’re probably wondering what is going on with our 6th Annual Buddy Walk.  As you know, last year was a transition year with CHOP’s staff getting more involved in the coordination.  With Westyn’s leaving and Rebecca Elias' taking over the as the liaison to the Buddy Walk (she's wonderful and has a ton of experience in event planning), things got off to a later start than in the past. However with each passing year, things get easier and planning doesn’t need to begin early in the year.  Although Special Events Dept. also is planning the Parkway Run (which falls on the same day), this year is well on its way to being the BEST Buddy Walk ever!

 Rebecca did the Save the Date and sent them out from CHOP.  I’m sure you’ll agree they are very professional.  At this point, she is working on the brochure and posters, and they will go out on a timely basis. WE WOULD LIKE VOLUNTEERS FROM EACH COUNTY TO HELP DISTRIBUTE POSTERS SO WE GET MORE EXPOSURE.  CHOP is encouraging everyone to register and donate through active.com, however a tutorial to make it easier and clearer will be provided (at least to team captains.)  This should be the last year for active.com, as CHOP is in the process of getting its own site. The Friends’ website will be updated shortly, reflecting the new event and items like Buddy Buttons. 

As for planning meetings, a few of us met just to discuss how committees are to be designed. There are no more “co-chairs,” and committees, meetings, and emails are going to be minimal. Rebecca works with an experienced staff and does not need as much day-to-day assistance from the Friends. This works well with our busy lives and provides us more opportunity to enjoy the event with family and friends. However, she still needs us to coordinate and use our contacts to increase attendance and donations and be on the subcommittees.   That being said, there are a few large committees under which the subcommittees will work.  They are as follows, with some overlap: 

CHOP (Rebecca) – elias@email.chop.edu

Collateral
Website Registration
Registration – Pre Event
Teams
Week Before (ties in with PR)

Public Relations (Lizanne) – lmagarity@aol.com

Spoken Program-Stage
Photography (Bobby)
Event Media/PSA
Developmental Fitness Program
Mascots

Event Day Logistics (Linda) – carwright0504@comcast.net

Food (Ed)
Event elements including –Vendors (Brightcliffes); Tot Lot, Moonbounce, etc.
Event Stage Entertainment Timeline

Event Day Finances (Susan Davis) Davisphily@comcast.net  

Finance
Registration Day of Volunteers (Jacqui D)

Sponsorship (Susan Scerbo) - sscerbo@wharton.upenn.edu       

Corporate and Individual Fundraising

Pre Event— (Grace) grace.wadell@verizon.net

Local/Entertainment Contact, PBS Sprout & VU
Map (Equipment rental -- VU and Anthony)
Ambulance
Silent Auction/Raffles (Dannenbaum)

 We need volunteers to help on the subcommittees.  Please contact the committee head if you would like to sign up for a committee.  We look forward to the biggest, best Buddy Walk yet, and look forward to working with you to make this happen.   

Prenatal 

  1. Postitive TV piece - The Blessing of a Down Syndrome Child
     

  2. Brownback, Kennedy Team up on Birth Defect Proposal – A bipartisan bill is in the works that would require that families who receive a diagnosis of Down syndrome or any other condition, pre-natally or up until a year after birth, be given up-to-date information about the nature of the condition and connection with support.  It will take a lot to get this to law, but you can see the attention is there and it is in the works.

Inspirational Stories

  1. Driven to Paint – a look inside the world of a painter
     

  2. Family finds room for one more – a family of 5 adopt a little girl the same age as their youngest who needs a home.
     

  3. The twins who are one in a million – fraternal twins that grown up together.  More than a boy girl difference.
     

  4. Wishes Do Come True – a little boy who has DS and leukemia is granted a wish from the Make a Wish foundation.
     

  5.  Teaching by example Stroudsburg school aide with Down syndrome has advantage in classroom – a woman with DS realizes her dream of becoming a teacher's aide.
     

  6. Hannah shows she has Heart ’n Soul – DJ Hannah mixes it up on the turntable.
     

  7. Karate black belt for Down's man – I know people first language, but check out this man getting his black belt.
     

  8. Terre Haute Boy Scout with Down syndrome on verge of reaching Eagle Scout – headline says it all.
     

  9. Where siblings lead the way -  a unique summer program sponsored by LaSalle University that combines siblings to share an experience.
     

  10. Flip-flops leave footprint on Down syndrome fight – A mother is inspired by the birth of her child to raise money for a DS group by bejeweling flipflops.
     

  11. Former baby-sitter keeps vow to care for child, now 50 – a teenage promise was kept when a former babysitter becomes a guardian to a women with DS when she is in need.
     

  12. Angels Go To Bat for Down Syndrome – A baseball team raises money for several DS causes.


DS Marketplace

  1. DS Awareness Products

Greg Citro, a MCDSIG member, created items for sale online at CafePress.  Use this link to view his unique creations:  http://www.cafepress.com/mindflakes/2916321 

  1.  Book: "I'm Not So Different" 

In her book, "I'm Not So Different," author Juliann Petruccelli shares the story of Jenna, a young woman with Down syndrome, who is "not so different" as her peers might suspect. Inspired by an actual child's enthusiasm and ability to relate to those around her, Petruccelli shares her story in this full-color book. The book can be purchased at Amazon.com.

 

Parent Suggestions/Learning Tools/New School

  1.  Social Books

A parent recommends the use of Social Books to help teach social behavior.  Social books are a story that you write using pictures and basic instructions specific to your child's situation, such as: "I cannot hit my friends (show pic of friends too), If I do, then I won't get to do xyz (show picture of activity they'll miss out on if they hit).  You can be creative and relay how your child's behavior could make others feel too.   Here is a link to some info on it: http://www.udel.edu/bkirby/asperger/socialcarolgray.html You can also google 'social stories' and find a lot more info. Another resource once you're ready to write specific social stories for your child is: www.sandbox-learning.com  I was told that reading the story to your child at least 3 times a day helps most.

  1. Visual Schedules

A behavior therapist that spoke to the group last year recommended using visual schedules to help our child see what's in store for them during the day and what comes next.  These schedules can be pictures of the activity or just icons or clip art that represent the activity.  These websites are full of ideas that you can use. 
dotolearn.com - lots of free stuff and supplies to buy
incrediblehorizons.com - if you can't find suitable supplies this site has them

  1.  New School

A new school is planning to open September 2007, in Harleysville, PA.  The Milagre Kids School is a non-profit private school started by parents and professionals that specializes in educating children with autism spectrum disorders. 
The school has one classroom with 5 children and 4 staff plus related services
for the 2007-2008 school year.  They are now accepting enrollment applications for 3 children grades 1-8 and employment applications for 1 teacher's assistant.

Please send inquiries to milagrekids@yahoogroups.com
Additional info www.milagrekids.org


Government Programs

  1.  Good News Regarding the PA Budget! –

The Pennsylvania State Budget was approved with funding to support Mental Retardation and Autism services and also a much needed 3% COLA (cost of living adjustment). Your calls and emails have made a tremendous impact.

> $26.9 M in funding to support the 3,428 people on the MR Waiting List including those on the emergency list and 800 students graduating from high school.

> $23 million in state and federal funds, an increase of $18.2 million, for autism programs for adults, including prepaid inpatient health care, statewide training and technical assistance, information outreach, assessment procedures and program monitoring to continue improving services for adults with autism.

  1. Persons with disabilities who want to work: 

Traditionally, persons with disabilities have been made to choose between pursuing employment and maintaining health care coverage. Today, in a continued effort to resolve this issue, the Social Security Administration has once again established a cooperative agreement with The Disability Rights Network of Pennsylvania (formerly Pennsylvania Protection and Advocacy Inc.) to provide benefits counseling for individuals ready to transition into the workforce.  The Disability Rights Network of Pennsylvania (DRN) is a federally-mandated, nonprofit agency that provides protection and advocacy services for people with disabilities.  The DRN creates links between advocates, service providers, consumers and their families, and community-based organizations through a variety of specialized programs, outreach events, and trainings.  For more information contact:

Community Work Incentives Coordinators services are Free and Confidential. To find out more about the Transition to Employment Program call your area Community Work Incentives Coordinator at 800-692-7443.

TRANSITION TO EMPLOYMENT PROGRAM
Disability Rights Network of Pennsylvania
1414 North Cameron Street Second Floor, Suite C Harrisburg, PA 17103
1-800-692-7443 ext. 309 V

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