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Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 78 November 1, 2008

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.

A Few Announcements and Our Thanks

November commemorates Veterans Day and Parent to Parent of NYS

would like to thank this country’s veterans for their service. We also thank

their families recognizing that military service requires sacrifices at home

as well.

November is National Adoption Month. According to the Dave

Thomas Foundation, there are more than 150,000 children awaiting

permanent homes in the North American foster care system. Many of

these children have special needs.

National Prematurity Awareness and American Diabetes Awareness

campaigns are also conducted in November.

As preparations are made to celebrate Thanksgiving, Parent to

Parent of NYS says thank you to all family, friends, and professionals who

undertake the role of caregiver and to those who partner with us in

connecting and supporting families.

Don’t forget to vote on Tuesday, November 4, 2008!

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

(Communication skills, parenting skills, letter writing, speaking with

professionals, asking questions)

An often overlooked aspect of advocacy is preventing the burnout which can occur

due to the accumulated stresses of care giving. The issue of burnout and excellent

tips for stress reduction are explored here:

http://www.helpguide.org/mental/burnout_signs_symptoms.htm

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The Centers for Disease Control and Prevention has released this flu guide for

parents:

http://www.cdc.gov/flu/protect/children.htm

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)

New York State provides adoption subsidies to offset the ongoing costs associated

with special needs adoptions. These children may also be eligible for continued

Medicaid coverage after finalization of the adoption. This information from the NYS

Adoption Service explains the eligibility and approval process:

http://www.ocfs.state.ny.us/adopt/subsidy.asp

This article addresses health insurance issues relevant for those with Diabetes:

http://www.jdrf.org/index.cfm?page_id=106130

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)

Accu-chek provides a comprehensive Back–to-School tool kit for communicating

information regarding diabetes management. It can be found under the

“Management” section on their Resources page:

http://www.accuchek.

com/us/rewrite/generalContent/en_US/article/ACCM_general_article_3488

.htm

The Department of Education has issued this guide to filing a discrimination

complaint with the Office of Civil Rights:

http://www.ed.gov/about/offices/list/ocr/docs/howto.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?

What parents should know before applying for SSI disability coverage for a child

under 18:

http://www.ssa.gov/disability/Child_StarterKit_Factsheet.pdf

and:

http://www.ssa.gov/disability/Child_StarterKit_Worksheet.pdf

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

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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?)

The following special needs toolkit developed by the Department of Defense is a

must have reference for military families or for anyone who supports them:

http://www.militaryhomefront.dod.mil/portal/page/itc/MHF/MHF_DETAIL_1?section

_id=20.40.500.570.0.0.0.0.0&content_id=218947

From Australia, this insightful guide explores the diverse expressions of grieving

parents of a child with disability can experience. It considers the role grieving can

play in the Parent-Child relationship and Parent-Professional partnerships:

http://www.education.vic.gov.au/ocecd/earlychildhood/library/publications/ecis/grie

f.html

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.

The SCOR (Special Care Organization Record) is a Health Care Notebook that has

been designed with the unique needs of the military in mind. Very comprehensive,

it is sure to hold pages that would be useful for both military and civilian families:

http://www.tricare.mil/mybenefit/Download/Forms/SCOR_2.doc

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?

March of Dimes offers this guide to effective partnership with Neonatal Intensive

Care Unit (NICU) staff:

http://www.marchofdimes.com/prematurity/21295_6084.asp

8. Understanding Medicaid funded Waiver Services (Including the

philosophy of individual and family-centered supports)

Although this press release is dated, it provides a good overview of the B2H

(Bridges to Health) Waivers for children in foster care. The B2H waivers are meant

to provide comprehensive services across systems (OMRDD, DOH, and OMH) for at

risk children in foster care and their families and caregivers. As long as eligibility

criteria are met, the waiver will follow the child to provide continuity of services

despite the child’s placement:

http://www.ocfs.state.ny.us/bridgestohealth/

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and a guide for professionals here:

http://www.ocfs.state.ny.us/main/b2h/about.asp

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 healthrelated

services and therapies?

On September 25th the ADA Amendments Act of 2008 (ADAAA) was officially signed

into law. This site archives pertinent documents that recall the legislative history of

the ADA and the ADAAA:

http://www.law.georgetown.edu/archiveada/

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 Q and A from the American Academy of Pediatrics discusses how to prepare a

child who has a chronic illness for independence:

http://www.aap.org/publiced/BK5_ChronicIllness_Cope.htm

11. Fathers – from Jim Swart, Fathers Network Coordinator

Since my daughter was born with Down syndrome one of my beliefs for her has

been that she is able to live a fully included life. Due to her disability she has had

many people in her life make both large and small decisions in her life. I would like

her to be able to do this, with supports, on her own. Self-determination is a way

that she may be able to attain this ability to make choices for her supports. Please

see the following websites for more information on self-determination:

http://www.nconsd.org/

http://www.sanys.org/

The March of Dimes offers tips to assist fathers who are coping with the experience

of having a child in the NICU:

http://www.marchofdimes.com/prematurity/21292_11225.asp

12. Other Links:

Learn more about how to become an adoptive parent here:

http://www.nysccc.org/Adoptive%20Parent%20Info/HowtoAdoptNYS.pdf

The September 2008 edition of Links Digest directed readers to a Boston Globe

article regarding Massachusetts’s decision to restrict reimbursement to hospitals for

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medical errors. New York State Medicaid has adopted similar policy changes. The

original press release can be found here:

http://www.health.state.ny.us/press/releases/2008/2008-06-

05_medicaid_cease_paying_never_events.htm

Recent guidance indicates the implementation timeline has been delayed for 11 of

the 14 “never events”. Implementation for air embolism, blood incompatibility, and

objects left in a patient after surgery is in effect as of 10/01/2008.

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

OR

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