Parent to Parent of NYS
New York's Family to Family
Health Care Information and Education Center
Fostering Family Leadership and Family-Professional Partnerships
NYS Affiliate Organization of Family Voices
Links Digest- Volume 136
September 2013
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.
Editor’s Note: The insurance marketplaces available through the Affordable Care
Act will start enrolling participants on October 1st for coverage effective January 1,
2014. The Links Digest will include additional links on health reform
implementation in New York State through the end of the year.
Health Reform Implementation
To learn more about health insurance options available through the New York State
of Health Marketplace, visit the official website at:
http://healthbenefitexchange.ny.gov/
Customer service for NYS’ Marketplace is available Monday through Friday from
8 am until 5 pm at 1-855-355-5777.
If you would like in-person enrollment assistance, use this map to locate In-Person
Assistors (IPAs)/Navigators by county and/or borough:
http://www.nystateofhealth.ny.gov/IPANavigatorMap
It is important to be sure you are visiting the official state exchange/marketplace
website. Also, be on the lookout for fraudulent e-mail solicitations regarding
“Obamacare” and/or the Affordable Care Act—we have seen them in our inboxes.
Learn how to ensure you are visiting the official state website here:
http://www.kaiserhealthnews.org/Stories/2013/September/12/lookalike-exchangewebsites.aspx
© Parent to Parent of NYS
September 2013
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The Affordable Care Act provides subsidies to make coverage affordable for
individuals earning up to 400% of the federal poverty level (about $46,000 for an
individual). This video explains that in order to determine eligibility for the
subsidies, it will be necessary to apply for coverage via the Marketplace:
http://www.kaiserhealthnews.org/Multimedia/2013/September/091113-shoppingforcoverage.aspx?utm_source=medicaidtop&utm_medium=email&utm_campaign=09
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Medicaid Redesign in NYS
New York State has received approval for the Fully Integrated Duals Advantage
program (FIDA), which will coordinate coverage and care for those enrolled in both
Medicare and Medicaid. Under New York's demonstration, all participating health
plans will be Medicaid managed long-term-care plans that are modified to include
Medicare services under a capitated payment model:
http://www.modernhealthcare.com/article/20130827/NEWS/308279967#ixzz2dJ9M
GNlA
Editor’s Note: Under a capitation model, the long-term-care plan would receive a
fixed per member, per month payment for providing all care for eligible enrollees.
A recent Wall Street Journal article regarding the impact of Medicaid Redesign
efforts in curbing medical costs in New York State:
http://online.wsj.com/article/AP674d96e69cee4be8aadc7fa6ef8e82cb.html
•
Families as Partners—Families of children with special health care needs
will partner in decision-making at all levels and will be satisfied with the services
they receive
Deciding whether to discuss a child’s disability with them can be a difficult decision
for parents. Even if the decision to talk about a diagnosis has been made, it can be
difficult to know exactly how to proceed. The Indiana Institute on Disability and
Community offers this guide to disclosure for families parenting a child with Autism
or Aspergers Syndrome:
http://www.iidc.indiana.edu/?pageId=362#sthash.XKs6kRJC.dpuf
•
Adequate Insurance and Financing—Families of children with special
health care needs will have adequate private and/or public insurance to pay for the
services they need
Frontline’s program Dr. Solomon’s Dilemma looks at the balance between care and
cost that physicians are being asked to maintain. The following program resource,
How Does Your Doctor Get Paid? The Controversy Over Capitation, looks at
capitation payment models and potential impacts on health care:
http://www.pbs.org/wgbh/pages/frontline/shows/doctor/care/capitation.html
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September 2013
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•
Medical Home—Children with special health care needs will receive
coordinated, ongoing, comprehensive care within a medical home
A patient with twelve years of chronic illness under her belt shares six tips to
prevent feeling intimidated when communicating with physicians:
http://www.kevinmd.com/blog/2013/08/6-tips-prevent-intimidated-doctorsoffice.html
•
Early, Continuous Screening—Children will be screened early and
continuously for special health care needs
September is Newborn Screening Awareness month. Learn more about Newborn
Screening in this archived webinar from The Global Genes project:
http://globalgenes.org/rare-webinar-series-newborn-screening/
•
Community-Based Services—Service systems must be organized so
families can use them easily and are satisfied
Learn more about the federal requirements regarding transportation and whether or
not your school district is in compliance in this article from Friendship Circle Blog:
http://www.friendshipcircle.org/blog/2013/09/23/6-questions-answers-abouttransporting-students-with-special-needs/
•
Transition to Adulthood—Youth with special health care needs will receive
the services necessary to make transitions to all aspects of adult life, including
adult health care, work, and independence
Tips for teens on how to take more responsibility for their health:
http://childrenshospitalblog.org/teens-time-to-take-more-responsibility-for-yourhealth/?utm_content=sf16624981&utm_medium=spredfast&utm_source=facebook
&utm_campaign=Social+admin&sf16624981=1
Additionally, we offer the following:
Fathers – from Jim Swart, Fathers Network Coordinator
Even the toughest of men melt when faced with a child’s disability. This dad has
made it his mission to care for his daughter:
http://www.today.com/moms/daddys-girl-ex-wrestler-devotes-his-life-caringdisabled-daughter-6C10975704
Other Links
The Centers for Disease Control, in cooperation with Family Voices and the
American Academy of Pediatrics, surveyed parents and physicians and found that
flu vaccination rates were low for children with intellectual disability (52%) and
epilepsy (59%). This is an important finding because children with neurologic and
neurodevelopmental conditions are at greater risk for poor outcomes related to
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September 2013
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infection from influenza viruses. The full CDC report Influenza Vaccination Practices
of Physicians and Caregivers of Children with Neurologic and Neurodevelopmental
Conditions — United States, 2011–12 Influenza Season is available here:
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6236a3.htm?s_cid=mm6236a3
_w
Google Glass seeks to transform surgery:
http://www.dailymail.co.uk/sciencetech/article-2404031/Doctors-Ohio-StateUniversity-use-Google-Glass-live-stream-surgery.html
● Have you found valuable links that you would like to share?
Please send them to Michele Juda at mjuda@ptopnys.org
● If you would like to speak to someone regarding your child with special
health care needs, contact Lara Turney at 1-800-305-8817 (Upstate NY) or
Annette Raia at 1-800-866-1068 (Downstate NY)
● Would you like to speak to Jim Swart, Regional Coordinator supporting our
Fathers’ Network? Call 1-800-305-8817 or email jswart@ptopnys.org
√ our website at www.ptopnys.org
√
www.facebook.com/ParentToParentNYS
Janice Fitzgerald, Executive Director, Parent to Parent of NYS
P.O. Box 1296, Tupper Lake, NY 12986
© Parent to Parent of NYS
September 2013
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