Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 91 December 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.

The Healthy People 2020 objectives have been released and through December 31, 2009 the opportunity for public comment exists. The link that follows will allow you to view the objectives in the various topic areas, including Disability & Secondary Conditions, and also make a public comment if you so choose. Additionally, we at Parent to Parent of NYS would welcome your feedback and comments regarding the Healthy People 2020 objectives. Anything that you would like to share with us can be forwarded to Michele Juda at f2fhealthtools@verizon.net<mailto:f2fhealthtools@verizon.net>.
http://www.healthypeople.gov/HP2020/Objectives/TopicAreas.aspx

1. Advocacy 101 - items that help strengthen advocacy skills -
(Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

From the CDC, tips on how to assure health and wellness for people living with disabilities:
http://www.cdc.gov/Features/Disabilities

This "Communication Emergency Kit" offers a one page reminder of how to communicate to achieve conflict resolution:
http://nysccc.org/advocacy/advocacy-basics/communication-skills/communication-emergency-kit/

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)

From the Developmental Disabilities Planning Council, a brief overview of financial assistance offered through the NYS Office of Temporary and Disability Assistance (OTDA). Information on free or low-cost health insurance options is also included:
http://ddpcmonthlyupdate.us/archive/2009/november/11_09_assistance.php

A glossary of managed care terms and their definitions:
www.mcres.com/mcrdef.htm<http://www.mcres.com/mcrdef.htm>

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)

This article, aimed at educators, provides the legal framework supporting a student's right to assistive technology when necessary to allow them access to the general education curriculum:
http://findarticles.com/p/articles/mi_qa3673/is_3_129/ai_n31481907/<http://rs6.net/tn.jsp?et=1102800845865&s=10002&e=001QGiFI9s_0dTwSLg-GaD3EJIi9N8-M9GQpylfOaJfjD5GKIzzTiD0HVwySpI_vEOK2XDQssragSqCmzmuoYYjPk4sdGQ4pPRQzLJfQnm8PB1zqOtZmtp6lL3JGuyglvsdXm30z7F8oPu2sMkYCMOHFGFepd2a7M-j0GoONeh-QV_VqyDo_8mu_oLNV7pG7Fl4>

This Parent Advocacy Brief from National Center for Learning Disabilities explains the impact the ADA Amendments Act of 2008 had on Section 504 of
the Rehabilitation Act of 1973:
http://www.ncld.org/images/stories/Publications/AdvocacyBriefs/UnderstandingADAAA-Section504/UnderstandingADAAA-Section504.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?

The Health and Nursing Services Resource Center was recently launched to provide web-based information related to health services at OMRDD:
http://www.omr.state.ny.us/health/index.jsp

Medicaid Buy-in information for working persons with disabilities in NYS:
http://www.health.state.ny.us/health_care/medicaid/program/buy_in/index.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?)

"You Are Not Alone: For Parents When They Learn That Their Child Has a Disability" is a good article whether this is new or you need a "refresher" course on parenting a child with special needs:

http://www.kidsource.com/NICHCY/parenting.disab.all.4.2.html

The following link reminds us that siblings of children with special needs are special too:
http://www.childrentoday.com/articles/special-needs/siblings-are-special-too-4268/

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.

Health Summary for your child with special health needs from NYS Department of Health:
http://www.health.state.ny.us/community/special_needs/docs/health_summary.pdf

NYS physicians and pharmacies will be offered incentives for the use of electronic prescriptions effective January 1, 2010, subject to CMS approval. The incentives are explained here:

http://www.health.state.ny.us/health_care/medicaid/program/update/2009/2009-11spec.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 Patient-Centered Primary Care Collaborative has issued "A Collaborative Partnership: Resources to Help Consumers Thrive in the Medical Home":
http://pcpcc.net/files/ConsumerGuidelines_0.pdf

Suggestions and excerpts from "The Seven Challenges Workbook- A Guide to
Cooperative Communication Skills for Success at Home and at Work":
http://www.newconversations.net/communication_skills_workbook_summary_and_toc.htm

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

Questions and Answers on Medicaid from "Navigating Medicare and Medicaid, 2005: A Resource Guide for People with Disabilities, Their Families, and Their Advocates" provided by Kaiser Family Foundation:
http://www.kff.org/medicare/7240/medicaid.cfm#a5

The CDC recently issued this H1N1 flu guidance for people with disabilities and their caregivers or personal assistants. It discusses that those who provide health-related home and community-based services or support services in day and residential programs for people with disabilities should be considered in the same risk group as "health care workers", which would put them in a priority group for vaccination:
http://www.cdc.gov/h1n1flu/disabilities/

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?

Read the details of NYS Senate Bill 3773 which addresses the conflict between New York's Timothy's Law and the federal Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008. The federal law which applies to group health plans for plan years beginning after October 3, 2009 does not offer the same level of protection regarding mental health services as compared to Timothy's Law:

http://open.nysenate.gov/openleg/api/html/bill/S3773

The Office for Civil Rights provides information on the obligation of postsecondary schools to provide auxiliary aids and services to qualified students who have disabilities under Section 504 and Title II of the ADA, including examples of different types of auxiliary aids and services:
http://www.ed.gov/about/offices/list/ocr/docs/auxaids.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).

From the NYS Department of Health, "Getting the Health Insurance You Need: A Fact Sheet for Teens and Young Adults":
http://www.health.state.ny.us/publications/4989.pdf

"Opening Doors to Self-Determination Skills: Planning for Life after High School" is a handbook developed by the Wisconsin Department of Public Instruction:

http://dpi.wi.gov/sped/pdf/tranopndrs-self-determination.pdf

11. Fathers - from Jim Swart, Fathers Network Coordinator

Inclusion of people with a disability is an important topic, but unless you have someone in your life with a disability it may be something you rarely think about. This was the case for Dan Habib before his son, Samuel, was born with Cerebral Palsy. Mr. Habib shot this documentary chronicling the Habib family's hard work to include Samuel in their everyday lives:
http://www.includingsamuel.com<http://www.includingsamuel.com/>

Betsy Smith shares the story of how inclusion helped her on her path to independence as an adult:
http://www.pbs.org/parents/inclusivecommunities/independence.html

Parents who have a child with special needs face many challenges. Military families who have a child with a disability face additional challenges (family member in harm's way, frequent moves, deployments, etc…). STOMP, Specialized Training of Military Parents, is a federally funded program that offers support to military families. This link provides information on this project:
http://www.stompproject.org<http://www.stompproject.org/>

12. Other Links:

Celebrating holidays can be stressful, particularly for parents of children with disabilities. This article includes lots of great tips for adapting holiday traditions and dealing with extended family members. It is geared towards the celebration of Christmas, but the ideas can be applied to other holiday celebrations and traditions:
http://www.oneplaceforspecialneeds.com/main/library_surviving_holidays.html

The U.S. Department of Education has issued guidance regarding waivers and flexibility available to schools that will not be in compliance with federal regulations due to closures necessitated by the H1N1 pandemic flu. It is lengthy and covers a variety of educational settings, but pages 4 through 7 are of note since they deal with children with special education services and disruption of those services due to a potential school closing:
http://www.ed.gov/admins/lead/safety/emergencyplan/pandemic/guidance/flexibility-and-waivers.doc
Find a flu vaccine near you with this county-specific vaccine locator:
http://www.flu.gov/individualfamily/vaccination/locator.html?WT.mc_id=fluLocator_Nov09&WT.mc_ev=click

? Have you found valuable links that you would like to share?
Please send them to Michele Juda at f2fhealthtools@verizon.net<mailto: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<mailto:jmswart1@verizon.net>

v our website at www.parenttoparentnys.org<http://www.parenttoparentnys.org>

Patricia R. Schissel, LMSW
President, AHA
Asperger Syndrome and High Functioning Autism Association (AHA), Inc.
PO Box 916
Bethpage, NY 11714
P/F:888.918.9198
www.ahaNY.org
PatS@ahaNY.org

Save the Dates!
*AHA's 10th Annual Spring Conference
Saturday, May 1, 2010, Adelphi University
John Elder Robison, keynote