Thursday, June 25th, 2009 10 am-noon

with time afterward for question and answer

308 Forest Avenue, 1st floor

This open house is free of charge however, registration is required.

Please RSVP to the email address or phone number listed below.

Space is limited and reserved on a first come, first serve basis.

These meetings are for adults only as we will be speaking directly about your children, it would not be appropriate for them to be present.

Although meetings will be geared towards parents and families, professionals are more than welcome to attend.

Have you heard the buzz about RDI®?

Are you wondering what RDI® is all about?

Do you want to know how RDI® would help your family?

Join Laura Hynes, RDI® Program Certified Consultant at an open house for parents where she will illustrate for you the Relationship Development Intervention® Program and how it can benefit your family.

Find out what motivates people on the autistic spectrum to develop relationships. People with Autism, Aspergers and NLD can learn not only to tolerate, but to enjoy change, transition and to go with the flow. The goal of RDI® is for each person to be excited about expanding their world, rather than to be afraid of it.

for Blind/VI Students,
Parents and Educators

Free Demo’s & Door Prizes

Raffle’s of the newest software!

Hands on teaching & training

Saturday May 30, 2009
Starting at 8:30 am
@Selis Manor
135 West 23rd Street

Come see what’s new & hot in the world of
technology for the blind and visually impaired.
Check out the newest hardware, software, screen readers, tactile maps, games, GPS and much more!

This event is proudly sponsored by the
Parents of Blind Children of New York

To register for this event:
718 567-7821 or 800 356-7713
For more info 212 222-1705

Richard Lavoie is a well-known speaker, author and advocate for children with learning disabilities. He has done a lot of work in the area of social skills. Try to see this video if you can.

Advance file photo
Staten Island’s first charter school is to be named after the late Assemblyman John W. Lavelle.
Many of the teachers have already been hired, the principal has been selected and the location has been discussed.

But today, the founders of Staten Island’s John W. Lavelle Preparatory Charter School finally got official approval from the state that they are, in fact, opening in September. The vote was originally scheduled for January but was delayed.

“I’m still trying to make sure I’m not dreaming,” said Ken Byalin, one of the founders. “It’s terrific.”

The first charter school on Staten Island, the Lavelle school is open to everyone but will focus on students with emotional challenges. Charter schools are publicly funded but privately run, with more flexibility in their operations than traditional public schools. Though there are several dozen charter schools in New York City, this will be the borough’s first.

Now all it needs are some students. A lottery to select the school’s students will be held Thursday at 7 p.m. at the South Beach Psychiatric Center on Seaview Avenue. About 150 applications have been received for 75 seats in the sixth grade. At the event, the school’s principal, Evelyn Finn, will introduce herself to prospective families.

The school is expected to be housed in the former Sea View Hospital Building in 2011. Until then, the Department of Education has proposed placing it in the Staten Island School of Civic Leadership, or PS/IS 861, a new school opening in Graniteville in September.

Byalin, the school’s founder, said the Sea View Hospital building required $30 million in renovations but that once the project is complete, the Health and Hospitals Corporation will lease the building for $1 a year for 99 years afterward.

The school is to be named after the late Assemblyman John W. Lavelle, the North Shore lawmaker and Staten Island Democratic Party chairman who made education a top priority.

– Reported by Amisha Padnani

Subject: Wrightslaw Special Education Law and Advocacy Training

Dear Colleagues,

We would like to share some exciting news about an upcoming conference which would be of great benefit to parents of children with disabilities and the professionals who work with them.

The Children’s Hearing Institute is sponsoring a workshop on Special Education Law and Advocacy Training at Mercy College in Southern Westchester County on Thursday, July 30th which will focus on Special Education Law, techniques, and test and measurements for ensuring that children obtain all legally guaranteed educational opportunities. Though sponsored by The Children’s Hearing Institute, the Wrightslaw Programs are designed to meet the needs of parents, educators, healthcare providers, advocates and attorneys who represent the interest of children with ANY type of disability.

Attached please find a copy of our Press Release as well as our Conference Brochure with the hope that you will make mention of this course on your website or newsletter to help distribute this information to parents and professionals who will benefit from this workshop. Parent discounts and early registration rates are available. If you wish to receive brochures for distribution, please contact us at 646-438-7858.

For further information and registration visit our website at www.childrenshearing.org and click on upcoming events.

Melissa A. Willis
Director of Educational Programming
The Children’s Hearing Institute
New York Eye & Ear Infirmary/Ear Institute
380 Second Avenue – 9th Floor
New York, NY 10010
Direct: 646-438-7858 Fax: 646-438-7859
mwillis@nyee.edu
www.childrenshearing.org

My name is Jill Mullin. I am an educator with 9 years of professional
experience working with children and adults who have been diagnosed
with autism; I have a MS in Education as well as a MA in Behavioral
Psychology. I am currently working on a book, provisionally titled
DRAWING AUTISM. The book has a scheduled release date of November 2009
and will be published by Mark Batty Publisher, a publisher that
specializes in books about visual communication.

Over the years I have become more and more interested
in the illustrations people diagnosed on the autism spectrum create.
Of course, the visual is how all of us inform ourselves of our places
in the world, but I have found illustrations by people with autism
possess a unique perspective that is acute, both in how they see the
world and how laypeople can be helped to understand how autistic
people may see the world.

Currently I am collecting submissions of works from many artists, all
the work must be completed by individuals on the autism spectrum.
Works will be collected through May 15th, 2009.

I am writing with the hope that you or someone you know may be
interested in submitting artwork for consideration for this book. A
limited number of artwork will be selected for inclusion in the book.
A portion of the proceeds from this book will be donated to autism
organizations.

If you are interested in participating in this project please scan and
email any submissions. If you prefer to send samples via mail, my
publisher’s address is listed below. If a work is chosen to be part
of this book, release forms will be sent to the artist from the
publisher.

If you have any specific questions regarding this project please do
not hesitate to contact me. Thank you so much for your time and
support and I look forward to hearing from you.

Sincerely,
Jill Mullin, MSED BCBA
drawingautism@gmail.com

Email submissions can be sent to:
drawingautism@gmail.com

Mail Submissions to:

Attn: Buzz Poole
Mark Batty Publisher, LLC
36 West 37th Street, Suite 409
New York, NY 10018

If sending submissions please include your name and/or artists’ name
and contact information.

Laurie

Shouldn’t we parents let someone at OPT know that this is unacceptable?

Anyone up for a meeting? I will try to get someone from OPT to come here and address this situation. I would love to do an evening meeting, I will try to make it happen. Let me know your thoughts on this.

New York’s Family to Family

Health Care Information and Education Center

Links Digest- Volume 83 April 1, 2009

As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

1. Advocacy 101 – items that help strengthen advocacy skills –

(Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

The Advocacy Institute is a non-profit organization dedicated to the development of products, projects and services that work to improve the lives of people with disabilities:

www.AdvocacyInstitute.org

Parents as Collaborative Leaders: Improving Outcomes for Children with Disabilities, a national partnership between the University of Vermont, PACER Center, and several other parent and advocacy organizations, offers an on-line training entitled “Listening and Asking Clarifying Questions” (a free registration is required):

http://www.uvm.edu/~pcl/modules.php

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

ACCESS NYC is a free service that identifies and screens for over 30 City, State and Federal human service benefits programs (i.e. Medicaid, food stamps, school lunches, child care, etc):

http://www.nyc.gov/accessnyc

Accessing Durable Medical Equipment (DME) with Managed Medicaid in NYS (Family Health Plus, Child Health Plus B):

http://www.closerware.net/content/cidnyweb/Files/Medicaid_Managed_Care/DME-2008.325.doc

3. 504 Accommodation Plans related to Health Conditions (i.e. what are the legal obligations of schools to provide health-related services and therapies? Accommodations needed for equal access)

New York State Department of Health – Diabetes in Children – A Resource Guide for Schools (February 2008):

http://www.health.state.ny.us/publications/0945.pdf

Here are two examples (one from Hawaii and one from North Carolina) of protocols used to meet the needs of children with swallowing difficulties and/or feeding tubes within the school environment:

http://doe.k12.hi.us/specialeducation/SpEdHandbook2006/05.5feedinginschool.htm

and

http://www.nrms.k12.nc.us/departments/student_health/pdf/Nursing_forms_2007/Tube_feeding_procedure_2007.pdf

4. Who helps with what? Which state agencies are involved in health care and health coverage? What do medical and managed care terms mean? What should families look for in selecting a provider? What questions should families ask?

View a list of community organizations that can help you apply for Children’s Medicaid or Child Health Plus here:

http://www.nyhealth.gov/nysdoh/chplus/where_do_i_apply.htm

This parent’s guide has valuable insight into the process of selecting a doctor, including questions families should ask:

http://www.kidneeds.com/diagnostic_categories/articles/parentsguide01.htm

5. Parent-to-parent support skill-building (How can parents provide support and assistance to families without substituting their judgment? Understanding and respecting cultural diversity. How can parents be culturally competent in working with diverse families? How can parents emotionally support, inform, and educate parents so that they are strong, knowledgeable, and confident in caring for their child with special health needs?)

In this article, “A Silent Epidemic: Health Illiteracy”, strategies for effective communication between medical providers and patients with limited literacy skills are discussed:

http://www.washingtonpost.com/wp-dyn/content/article/2007/02/16/AR2007021602260.html

¡TradúceloAhora! (Translate Now!) can translate emails and websites from English to Spanish and Spanish to English thanks to technology powered by IBM. The user must be affiliated with a participating school or non-profit; the list of participating organizations is available on the registration page. Find a direct link here: http://www.championsinc.org/resources/showItem.cfm?id=268

Another site for translation:

http://translate.google.com/translate_t?hl=en# Will translate text or websites to 41 languages.

6. Keeping Records is a learned skill. Parents will learn what kinds of records are important and how to record necessary information. Your child’s health care providers rely on your records to help them make sound medical recommendations.

This article offers tips for letter writing and discusses the empowerment that results from effective record keeping:

http://www.aahbei.org/files/forms/Wilson.pdf?PHPSESSID=a3f3b614ac013c587c735d1c2689f685

10 myths about HIPAA (series of pages on the web):

http://patients.about.com/od/yourmedicalrecords/ss/hipaamyths.htm

7. Parent-professional collaboration strategies. How can families work with their health care provider to secure quality care and coverage for their child? How can health care provider and families communicate more effectively? What are effective health advocacy strategies? What is a “medical home” and how can parents access it for their child with special health needs?

The American Society for Parental and Enteral Nutrition (A.S.P.E.N.) has released “Enteral Nutrition Practice Recommendations”, a document which culminated from the work of a task force assigned to gather expert opinion about both the safe use of enteral nutrition and best practices. A free PDF download is available here, as well as posters that can be used during hospitalizations to prevent errors:

www.nutritioncare.org/safety

Find tips for talking with your child’s doctors here (also available in Spanish):

http://kidshealth.org/parent/general/sick/talk_doctor.html

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

The New York State Department of Health offers a program manual to provide information about the policies and procedures of the Nursing Home Transition and Diversion (NHTD) Medicaid Waiver: http://www.health.state.ny.us/facilities/long_term_care/waiver/nhtd_manual/index.htm

From that program manual, a description of the rights and responsibilities of NHTD waiver participants: http://www.health.state.ny.us/facilities/long_term_care/waiver/nhtd_manual/section_02/part_02_d.htm

9. Legal information – what are the rights of children to medical coverage under Medicaid, SCHIP, fee-for-service coverage. How can families use complaint, arbitration, and grievance procedures to resolve disputes? What are the legal obligations of schools to provide health-related services and therapies?

On October 3, 2008, the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 was enacted. This law requires large employer groups (groups with more than 50 employees) that offer mental health and substance abuse disorder benefits to offer those benefits in full parity with the other medical benefits:

http://www.caron.org/assets/Uploads/Mental-Health-Parity-2008-final-summary.pdf

NYS had already enacted Timothy’s Law which provides broader protections than the Federal Law, but which is set to expire on December 31, 2009. The NYS Office of Mental Health explains the implications of this (scroll about half-way through the newsletter to find the article):

http://www.omh.state.ny.us/omhweb/resources/newsltr/2009/feb.html

10. Transition from Pediatric to Adult Health Care and Self Determination in Health Care (the important leadership role that individuals with disabilities and their families must play in moving from pediatric to adult health care).

This recent Boston Globe article discusses the difficulties of locating adult-care providers for children with disabilities:

http://www.boston.com/news/local/massachusetts/articles/2009/02/02/seeking_grown_up_care/

Developed by the Illinois Chapter of the American Academy of Pediatrics this brochure provides teen transition facts for health care professionals:

http://www.illinoisaap.org/IL-TeenTransition.pdf

11. Fathers – from Jim Swart, Fathers Network Coordinator

As spring arrives and the end of “cabin fever” comes with it we must remember that our children are also anxious to go out and enjoy the coming nice weather. A couple things to think about are how our children react to dining out and the planned family trips. Dads can take the lead on these subjects and be proactive in researching the needs of our children. About.com has some tips for parents who have a child with special needs, please see the links below:

Dining out: http://specialchildren.about.com/od/mealtime/tp/diningout.htm

Family Trip planning: http://specialchildren.about.com/b/2008/05/23/read-your-way-through-road-trips.htm

12. Other Links:

The Catalyst Center’s latest publication,” Breaking the Link between Special Health Care Needs and Financial Hardship”, describes three distinct links between having a child with special needs and family financial hardship and provides examples of proven strategies and policy solutions to reduce or eliminate their impact: http://www.hdwg.org/files/resources/Catalyst_Center_Breaking_The_Link.pdf

New York Medicaid is implementing regional demonstration pilots that will test an interdisciplinary model of care to improve health care quality, ensure appropriate use of services, improve clinical outcomes, and reduce the cost of care for beneficiaries with medically complex conditions. The pilots will be based in New York City, Long Island (Nassau County), Capital District Region (Albany County), Western Region (Erie County), and Westchester County:

http://www.chcs.org/info-url_nocat3961/info-url_nocat_show.htm?doc_id=676169

● Have you found valuable links that you would like to share?

Please send them to Michele Juda at f2fhealthtools@verizon.net

1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email jmswart1@verizon.net

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS

P.O. Box 1296, Tupper Lake, NY 12986