Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

And NYS Affiliate Organization of Family Voices

Links Digest- Volume 105 February 1, 2010

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.

Health Reform Implementation

Starting in 2014, a provision of the Affordable Care Act will prevent insurance
companies from denying coverage because of pre-existing conditions for all
consumers; the provision is already in place for children. Furthermore, they will not
be able to charge higher rates due to pre-existing conditions. This article from
Kaiser Health News explains how some states currently address the issue of
providing coverage for those with pre-existing conditions in the individual insurance
market. NYS is cited in the article as one of five states that offer “guaranteed-
issue”. Guaranteed issue means that all insurers must provide coverage to all who
apply, regardless of their health, however it does not assure the coverage will be
affordable:
http://www.kaiserhealthnews.org/Features/Insuring-Your-Health/michelle-andrews-
on-state-based-insurance.aspx

The article above references the creation of Pre-Existing Condition Insurance Plans
(PCIPs) which are meant to serve as a temporary means of providing insurance to
legal residents with pre-existing conditions who have been uninsured for at least 6
months. Once Health Insurance Exchanges are established in 2014 these plans will
no longer exist. More information on NYS’ PCIP, the NY Bridge Plan, can be found
here:
http://www.ins.state.ny.us/health/high_risk.htm

Medicaid Redesign in NYS

Links that may be of interest to readers who are following the Medicaid Redesign
process in NYS have been highlighted throughout the Digest:

© Parent to Parent of NYS February 1, 2011 1

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

The Early Intervention Partners Training Project is for New York State parents
of young children with disabilities to help them become more actively involved in
Early Intervention Program leadership activities. The training sessions provide
information, resources, and skill-building activities designed to increase parent
advocacy and leadership skills. A training series will begin in Syracuse, NY in
March. Applications are being accepted through February 25, 2011. More
information is available here:
http://www.eifamilies.com/training.asp

Tips on telling your story and giving public testimony:

http://contracostaarc.com/assets/CARE/Telling_Your_Story-
Giving_Testimony_10.pdf

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)

Information regarding the Governor’s Executive 2011-2012 budget can be found

here:
http://publications.budget.state.ny.us/eBudget1112/ExecutiveBudget.html

“Medicaid Transportation in New York: Background and Options” was published by

the United Hospital Fund’s Medicaid Institute in November of 2010. The report
examines NY’s current system for non-emergency Medicaid transportation including
the strengths and weaknesses of the program and assesses alternative approaches
to improve the program and reduce costs. The NYS Department of Health was
recently given authority to restructure the program and as a Medicaid funded
service, this may be looked at as part of the Medicaid Redesign process:
http://www.uhfnyc.org/publications/880712

3. Meeting health needs at school (i.e. What are the legal obligations of
schools to provide health-related services and therapies? What are 504
accommodations to assure equal access?)

The National Center on Accessible Instructional Materials discusses how a Section

504 Plan can be utilized to assure access to instructional materials in specialized
formats. The document includes links to several resources that explain Section 504
and the difference between IDEA and Section 504:
http://aim.cast.org/learn/policy/federal/504_plan

The School Supportive Health Services Program and the Preschool Supportive
Health Services Program are joint efforts between the State Education Department
and the Department of Health to assist school districts, counties and §4201 schools
(created by legislation to provide educational services to children who are deaf,

© Parent to Parent of NYS February 1, 2011 2

blind or physically challenged) in obtaining Medicaid reimbursement for certain
diagnostic and health support services provided to students with disabilities. More
information about the use of Medicaid funding within the school setting is available
here:
http://www.oms.nysed.gov/medicaid/

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 Office for People with Developmental Disabilities offers information about
managed health care plans for people who have Medicaid. It addresses questions
to consider before making a decision to join a Medicaid managed care plan and
explains who is excluded from joining and who may be able to request an
exemption from enrollment:
http://www.omr.state.ny.us/document/medicaid/hp_medcover.jsp

“HMOs vs. PPOs – What Are the Differences Between HMOs and PPOs?” an article
from about.com:
http://healthinsurance.about.com/od/understandingmanagedcare/a/HMOs_vs_PPOs
.htm?nl=1

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?)

Hands & Voices is a nationwide non-profit organization dedicated to supporting

families and their children who are deaf or hard of hearing. The article below,
which addresses how their mission was established to value unbiased support to
families faced with decisions, applies to any parent who supports another parent
regardless of diagnosis:
http://www.handsandvoices.org/articles/fam_perspectives/wo_bias_V8-2.htm

“Finding Peer Support as a Parent”, an article from Complex Child:

http://articles.complexchild.com/aug2009/00147.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 NYS Department of Health offers this question and answer guide to commonly
asked questions regarding access to medical records:

© Parent to Parent of NYS February 1, 2011 3

http://www.health.state.ny.us/publications/1443/

The following link to “Kids Health” gives some great tips on what medical records
you should keep and why:
http://kidshealth.org/parent/firstaid_safe/home/medhist.html

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?

Brad and Karen Thompson realized to meet the needs of their daughter, Hali, they
would need “a community—with point people guiding the way.” Their experience
lead to the creation of the Hali Project which puts professional parent consultants in
doctors’ offices to improve the coordination of medical and community-based
services for children with special needs and their families:
http://journalstar.com/lifestyles/family/article_eea98160-3de0-564a-a8c5-
4835208cbb6e.html

The Frequently Asked Questions page from the Institute for Patient- and Family-
Centered Care helps to explain the term “family centered care”, including what it
involves, what the intended outcomes are and the long-term benefits of such a
model. It also explains why both the patient and the family are important partners
within a medical home:
http://www.ipfcc.org/faq.html

8. Understanding Medicaid funded Waiver Services (Including the

philosophy of individual and family-centered supports)

Understanding Medicaid Service Coordination Check out the updated 8 page

booklet on Understanding Medicaid Service Coordination developed by Parent to
Parent of NYS
http://www.parenttoparentnys.org/Services/MSC/mscbooklet.htm

The New York Self-Determination Coalition is an ad hoc group of parents, self-

advocates, and professionals who are dedicated to promoting self-determination as
an option for persons with developmental disabilities who require support through
NYS OPWDD’s Waiver program:
www.nyselfd.org

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

© Parent to Parent of NYS February 1, 2011 4

disputes? What are the legal obligations of schools to provide health-
related services and therapies?

An adult child, disabled prior to the age of 22, may be eligible for a Child Disability
Benefit from Social Security when their parent retires, becomes disabled, or dies.
This article discusses the impact a parent’s retirement age has on this benefit:
http://www.specialneedsalliance.org/the-voice/4/11

Private schools, with the exception of religious schools, are required to be in

compliance with Title III of the Americans with Disabilities Act. This article from
Disability Scoop cites a recently settled law suit between the Department of Justice
and a private school provider which alleged the provider excluded students with
autism, Down syndrome and other disabilities from their programs:
http://www.disabilityscoop.com/2011/01/18/private-school-stop-
excluding/11948/?utm_medium=email&utm_campaign=January+18%2C+2011%3
A+News+from+Disability+Scoop&utm_source=YMLP&utm_term

More information on Title III of the ADA can be found here:

http://www.ada.gov/t3hilght.htm

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).

“Transitioning Adolescents to Adult Care: Putting Theory into Practice” written by

Sheldon Berkowitz, M.D., FAAP describes the challenges of transition and how they
are being addressed by a group of providers and family members at the Children’s
Hospitals and Clinics of Minnesota. The group developed a “Roadmap” for transition
which discusses 7 issues providers should address as part of the plan. The group
continues to reach out to stakeholders to resolve transition-related challenges,
including the need to identify adult care physicians who have experience in caring
for complex patients and develop protocols to support physicians who are willing to
do so:
http://www.minnesotamedicine.com/CurrentIssue/ClinicalBerkowitzMarch2009/tabi
d/2905/Default.aspx

“New Directions, New Doctors: Changing from Pediatric to Adult Health Care”:
http://newsinhealth.nih.gov/issue/Sep2010/Feature1

11. Fathers – from Jim Swart, Fathers Network Coordinator

A NY Times story about Michael Lizarraga, a student athlete at Cal State Northridge
who is deaf, that chronicles his desire to play Division 1 basketball, the choices his
parents made and the effect he has on his coach and teammates:
http://www.nytimes.com/2010/12/23/sports/ncaabasketball/23northridge.html?_r
=1&hp

© Parent to Parent of NYS February 1, 2011 5

This article from athealth.com focuses on sibling needs, family stresses, the
importance of finding correct information and planning for the future:
http://www.athealth.com/Consumer/disorders/disabsibling.html

12. Other Links:

The following article addresses the complicated issues that arise when parents who
are raising a child with special needs divorce. Depending on the child’s disability
there are important financial decisions that need to be considered, as well as the
logistics of shared custody (especially when the child relies on medical equipment
and technology), sharing the child’s medical records, academic reports, etc.:
http://www.doover.com/Kids/ID/177/Divorce-Planning-for-Children-with-Special-
Needs.aspx

Seasonal Affective Disorder—know the signs

http://www.nami.org/Template.cfm?Section=By_Illness&Template=/TaggedPage/T
aggedPageDisplay.cfm&TPLID=54&ContentID=23051

● 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

© Parent to Parent of NYS February 1, 2011 6