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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
Links that may be of interest to readers who are following the Medicaid Redesign
process in NYS have been highlighted throughout the Digest:
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
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 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,
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
The NYS Department of Health offers this question and answer guide to commonly
asked questions regarding access to medical records:
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
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
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
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).
“New Directions, New Doctors: Changing from Pediatric to Adult Health Care”:
http://newsinhealth.nih.gov/issue/Sep2010/Feature1
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
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
● 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