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 118
March 2012
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
Featuring people like Vanessa, who faced years of struggles with insurance
companies over things like lifetime limits, MyCare is an initiative to educate
Americans about new programs, benefits, and rights under the health care law.
Vanessa’s story is documented in this YouTube video:
http://www.youtube.com/watch?v=qUuvkixlbQY
For more information on MyCare, visit:
http://www.healthcare.gov/mycare.
Beginning about September 23, 2012, the Affordable Care Act will make it easier to
make decisions when comparing various health insurance options. As a result of
changing regulations, insurers will be required to use plain language when they
describe the terms and benefits of their respective plans and provide coverage
examples that can be compared across plans. Consumers will be able to see what
is covered, any limitations of coverage, and the cost of benefits using these new
standardized tools:
http://www.hhs.gov/news/press/2012pres/02/20120209a.html
Medicaid Redesign in NYS
Spousal/parental refusal is a technique used to become income/resource eligible for
Medicaid coverage. It is not the same as having parental income and resources
disregarded (waived) for the purposes of HCBS-waiver eligibility.
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March 2012
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Elimination of the spousal/parental refusal provision is a recommendation of the
Medicaid Redesign Team and has been included in the Governor’s proposed 20122013 budget. Elimination of this provision would create spend-downs for families
who utilize a parental refusal to secure Medicaid for their disabled child. Spenddowns are a means of access to Medicaid when the applicant is over
income/resource levels, the excess income/resources are “spent down” on care
each month to the eligibility levels.
Elimination of spousal/parental refusal, if successful through the legislative
process*, will not affect families whose access to Medicaid benefits for their child is
through a HCBS waiver. Per a Question and Answer on Medicaid Redesign
document posted on the NYS DOH website:
“Will the elimination of spousal refusal mean that parents of disabled children
are going to have to pay for the costs of their care?
Parental income and resources would continue to be disregarded for disabled
children participating in a home and community based waiver program (e.g., Care at
Home Program).
For disabled children under age 18 who are not participating in a waiver program, a
portion of the parent's income and resources would be deemed available to the
disabled child for purposes of determining the child's Medicaid eligibility.”
The document is available here; above text is from page 3:
http://www.health.ny.gov/health_care/medicaid/redesign/docs/medicaid_redesign_
team_questions_and_answers.pdf
* Preliminary information regarding the 2012-2013 budget agreement indicates that spousal/parental
refusal is not being included in the final budget.
The Medicaid Redesign Team is still accepting suggestions and ideas from the public
on how to make improvements and implement Medicaid savings for the long term.
If you have suggestions, you are encouraged to share them through the link below:
https://apps.nyhealth.gov/health_care/medicaid/redesign/contact_form.action
1.
Advocacy 101 – items that help strengthen advocacy skills –
(Communication skills, parenting skills, letter writing, speaking with
professionals, asking questions)
Hospital Compare is a website that allows you to compare hospitals in and around
your location or zip code. Hospitals can be compared side to side on their patient
satisfaction results. Additionally, there are tabs that allow you get information on
Manage Your Health, Medicare Basics, Resource Locator as well as Help & Support.
The site is for both consumers and professionals:
http://hospitalcompare.hhs.gov/
© Parent to Parent of NYS
March 2012
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“How to avoid a health insurance claim denial -- and what to do when you can't”
provides tips on how good recordkeeping can help avoid a health insurance denial
and what steps to take if your claim is still denied:
http://www.insure.com/articles/healthinsurance/claim-denial.html
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)
A new brief from the Kaiser Family Foundation's Commission on Medicaid and the
Uninsured provides a comprehensive look at the Medicaid appeals process. This
background brief describes the appeals system available to Medicaid applicants and
beneficiaries, including the fair hearing process and the appeals process required
for Medicaid managed care organizations:
http://www.kff.org/medicaid/8287.cfm
Consumers are finding that their insurance companies may be switching how they
calculate payment for out-of-network medical treatment from a percentage of usual
and customary charges to a calculation based on Medicare reimbursement rates,
which can be much lower. According to this article by Kaiser Health News and USA
Today, more insurance companies are moving to this practice to cut costs leaving
patients footing higher bills:
http://www.kaiserhealthnews.org/Stories/2012/February/09/consumers-hit-byhigher-out-of-network-medicalcosts.aspx?utm_source=instop&utm_medium=email&utm_campaign=020912
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 Centers for Disease Control and Prevention's Division of Adolescent and School
Health has issued “Parent Engagement: Strategies for Involving Parents in School
Health.” Written for school health and education professionals, it provides insight
into strategies for creating an effective partnership with school:
http://www.cdc.gov/healthyyouth/adolescenthealth/pdf/parent_engagement_factsh
eet.pdf
“No, The School Nurse Is Not In” is an article by NPR that examines how school
nurses are being cut during tough financial times in schools even as more children
with special needs, particularly children who rely on nursing services due to special
health issues, are increasing in numbers.
Editor’s note: This NPR presentation is meant for a national audience; the Nurse
Practice Act in each state dictates what procedures can be delegated to nonlicensed personnel, many states have much more liberal policies than New York and
allow a greater variety of tasks to be delegated:
http://www.npr.org/2012/01/03/144615747/no-the-school-nurse-is-not-in?sc=tw
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March 2012
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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?
Medicaid Facts—New York is a tip sheet produced by the National Association of
Children’s Hospitals and the American Academy of Pediatrics last summer. It
provides some interesting statistics about Medicaid and how it helps children in the
state:
http://www.childrenshospitals.net/AM/Template.cfm?Section=N_A_C_H_News_and
_Resources&Template=/CM/ContentDisplay.cfm&ContentID=1835
The ARC’s Medicaid Reference Desk provides a concise overview of various
Medicaid-funded programs in New York State:
http://www.thedesk.info/state/new-york/
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?)
The Defense Centers of Excellence for Psychological Health and Traumatic Brain
Injury has created a resource guide to assist parents, other family members and
health care providers in addressing the mental and emotional health needs of
military children faced with their parents’ deployment, rehabilitation or
reintegration. The guide can be found here:
http://www.dcoe.health.mil/Content/Navigation/Documents/DCoE%20Children%20
of%20Military%20Service%20Members%20Resource%20Guide.pdf
“America's Health Literacy: Why We Need Accessible Health Information” is from
the Office of Disease Prevention and Health Promotion. This article explores health
literacy across cultural and social backgrounds and explores some ways to improve
understanding and promote health literacy. According to the study findings, 77
million Americans, over 1/3 of US adults, have basic or below basic health literacy
levels: http://health.gov/communication/literacy/issuebrief/
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.
“Creating an ER Protocol for your Child” is an article from Complex Child EMagazine. The article looks at the benefits of a written protocol letter from a child’s
physician to streamline ER visits and prevent situations that could be impacted by
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March 2012
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long wait-times. Having a concise, written letter can provide the triage nurse with
vital information at a critical time for a child with complex medical issues:
http://articles.complexchild.com/feb2012/00364.html
My Med Schedule is a free, secure online way to track medication for yourself or
family members. It provides a schedule that can be customized and printed. It is
useful for reminders of when to take a prescription, when to refill the prescription
and can even send reminders to your email and select smart phones. A wallet-size
schedule can also be printed for on-the-go or to share with a provider. This service
is available in English and Spanish and complies with HIPPA regulations. It works
through an internet browser, so there is no program to download. A demo video is
available on the website for more information:
http://www.mymedschedule.com
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?
Supported by a grant from the Innovation Acceleration Program, Children’s Hospital
Boston will be piloting a program to hopefully improve family-patient-physician
communication and reduce readmissions. A text message will be sent the day
following hospital discharge to assure important discharge instructions were not lost
in the information overload so common during a hospital stay:
http://vectorblog.org/2012/01/could-texting-patients-reduce-hospitalreadmissions-thinking-through-an-innovation/
“Medical Home Innovations: Where Do Adolescents Fit?” looks at how to utilize the
medical home model as a means of improving adolescent care and proactively
address issues unique to the teen years:
http://www.thenationalalliance.org/pdfs/Report7.%20Medical%20Home%20Innova
tions.pdf
8.
Understanding Medicaid funded Waiver Services (Including the
philosophy of individual and family-centered supports)
This February 2012 presentation, initially offered by OPWDD to voluntary providers,
provides an update on the People First 1115 Waiver:
http://www.opwdd.ny.gov/2011_waiver/images/hp_vo_update_statewide_vc_2_17
_12.pdf
The above presentation, and other information, is posted on OPWDD’s People First
Waiver webpage. This webpage is a means to keep all stakeholders informed
regarding the development of the 1115 waiver application:
http://www.opwdd.ny.gov/2011_waiver/index.jsp
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March 2012
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AHRC Suffolk offers their thoughts on what must be done to maintain support for
people with developmental disabilities in the article “The 1115 Waiver – the New
Way Services and Supports will be Developed in New York State: How We Got Here
and What We Really Need to Do Build a Stronger System for People with
Developmental Disabilities”:
http://www.ahrcsuffolk.org/content/1115-waiver-%E2%80%93-new-way-servicesand-supports-will-be-developed-new-york-state-how-we-got-here
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?
The Dignity for All Students Act will take effect on July 1, 2012. This act seeks to
provide public school students with a safe and supportive environment free from
discrimination, intimidation, taunting, harassment and bully on school property, a
school bus and/or at a school function. Learn more here:
http://www.p12.nysed.gov/dignityact/
Under the Affordable Care Act, children with pre-existing conditions can no longer
be denied coverage or receive limited benefits. This important protection was
enacted as part of the Patient Bill of Rights in September of 2010:
http://www.healthcare.gov/law/features/rights/childrens-pre-existingconditions/index.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).
Families USA and the organization “Young Invincibles” have developed a toolkit to
help young adults seeking insurance coverage. As described by Families USA, “The
toolkit gives state by state coverage options as well as up-to-date information on
the costs and benefits of student health plans, information on how to stay on your
parent's plan, assistance for individuals with pre-existing conditions, and updates
on the ACA. It also has tips for young women, important information on young
adults and cancer, and much more.”
http://www.gettingcovered.org/Toolkit/
“ADHD in the Workplace: Overcoming Obstacles and Getting the Job Done” is an
article from NAMI, the National Alliance on Mental Illness. The article provides 5
steps to securing accommodations in the workplace and 10 tips for employees
regarding ADHD. Additionally it provides some work environment accommodations
to consider and a brief overview of rights under the law:
http://www.nami.org/Template.cfm?Section=ADHD&Template=/ContentManageme
nt/ContentDisplay.cfm&ContentID=106390
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March 2012
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11.
Fathers – from Jim Swart, Fathers Network Coordinator
Are you the best father you can be? Don’t we all need some modification in the
process of being a father? The website, Naturalpapa.com, has put together a list of
100 ways to be a better father. Do you have the power of “Bilocation”? Check out
number 97 “father Superpowers” and see if you are. Some we have perfected,
some we have already mastered, but it is fun to look over lists and analyze
ourselves compared to the list:
http://naturalpapa.com/fatherhood/100-ways-to-be-a-better-father/
Dads are you a sporty kind of guy? Do you participate, coach, spectate or all of the
above? Are you active in your daughter’s sports life? Fathers.com has a list of 10
tips on how to be a great supportive sporting dad. Within the tips Fathers.com has
also put links for further research. Many of these can also work with our sons:
http://www.fathers.com/content/index.php?option=com_content&task=view&id=69
4&Itemid=63
12.
Other Links:
March celebrates Child Life month. Child Life Specialists work within hospital
settings to improve the care experience for pediatric patients. If you have ever
wondered about the role or function of the Child Life Specialist, or have appreciated
their work, you will enjoy this poem written by Steve Slowinski, former Child Life
Intern at Connecticut Children’s Medical Center:
http://www.childlife.org/Child%20Life%20Month/ChildLifePoem.cfm
“Under Pressure, New York Moves to Soften Tough Medicaid Audits”, an article from
the NY Times (requires a free registration to view):
http://www.nytimes.com/2012/03/19/nyregion/new-medicaid-inspector-generalsupports-less-adversarial-audits.html?pagewanted=2&tntemail0=y&_r=1&emc=tnt
● 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
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March 2012
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