Académique Documents
Professionnel Documents
Culture Documents
The Joint Center for Political and Economic Studies has issued a report detailing
how health care reform addresses the issue of racial disparities in health related
services and health care outcomes. The report entitled: “The Patient Protection
and Affordable Care Act of 2010: Advancing Health Equity for Racially and
Ethnically Diverse Populations” is available for download at no charge from their
website:
http://www.jointcenter.org/hpi/sites/all/files/PatientProtection_PREP_0.pdf
In 2014 under a provision of the Affordable Care Act, insurers will be required to
pay for “routine care” regardless of whether an insured is participating in a clinical
trial. This means that care that would have been covered under the health
insurance policy if the insured was participating in a standard treatment must be
covered even if they elect to enroll in a clinical trial. This applies to all clinical trials
that treat cancer or other life-threatening diseases:
http://www.cancer.gov/ncicancerbulletin/051810/page5
The following article discusses various types of Managed Care Plans and their
impact on children’s’ health care. It includes a discussion of issues related to
access, quality of care, and cost:
http://education.stateuniversity.com/pages/2196/Managed-Care-Children.html
The Center for Medicare and Medicaid Services provides an overview of CHIP dental
coverage:
http://www.cms.gov/CHIPDentalCoverage/
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 Oley Foundation has outlined the importance of having an Individual Health
Plan (IHP) for students with chronic health conditions. Although an IHP is not a
legal document, if it’s included in your Childs IEP or 504 Plan it becomes part of
that legal document. An IHP expands upon the health condition and how it relates
to the individual child:
http://www.oley.org/lifeline/IHP_IEP.html
New York State does not require schools to have a school nurse; however, if the
school hires a school nurse, NYS Education law requires that they must hire a
Registered Professional Nurse (RN). In this position statement, the NYS Association
of School Nurses advocates that Licensed Practical Nurses (LPNs) can also play a
valuable role under the supervision of a RN:
http://www.nysasn.org/LPNPositionStatement.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?
November is National Adoption Month. The NYS Citizens’ Coalition for Children
provides support, information and advocacy for foster and adoptive parents and
professionals in New York State, including those caring for children with
developmental disabilities and special health care needs:
www.nysccc.org
“Supporting Family Life for Children with Disabilities: What We Know and Don't
Know” discusses children with disabilities within the child welfare system,
specifically the difficulties in identifying and meeting their needs within the context
of families:
http://ici.umn.edu/products/impact/191/over2.html
The Center for Children with Special needs at Seattle Children’s Hospital has a
variety of record keeping systems available, many of which help your child become
involved in the process:
http://cshcn.org/planning-record-keeping
The following link provides some tips for communicating effectively with your child’s
health care providers:
http://www.medicalhomeportal.org/living-with-child/caring-for-children-with-
chronic-conditions/managing-and-coordinating-care/communication-guide
The following article talks about family-centered rounds which are designed to get
parents more involved in decisions about their child’s care during hospitalizations:
http://www.reuters.com/article/idUSTRE65R4A620100628
A comparison of Home and Community Based Services Waivers offered through the
Office of Mental Health, OPWDD, and the Bridges to Health program (for children in
foster care or under the supervision of the Division of Juvenile Justice and
Opportunities for Youth) is offered here:
http://www.ccf.state.ny.us/Initiatives/ChildPlan/cpResources/ComparisonOfWaivers
.pdf
The Office of Mental Health offers this guide to patient rights for those who receive
outpatient mental health services:
http://www.omh.state.ny.us/omhweb/patientrights/outpatient.pdf
The Office of Mental Health offers this guide to patient rights for those who receive
inpatient mental health services:
http://www.omh.state.ny.us/omhweb/patientrights/InRtsWeb.pdf
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 Hampshire's Center for Medical Home Improvement has been awarded $1.3
million by the federal government to create a National Health Care Transition
Center for Youth with Special Health Care Needs. Mallory Cyr is working with the
center and shares some of her experiences in making the transition to adult care
providers and college as a young adult with chronic health issues here:
http://www.seacoastonline.com/articles/20100705-NEWS-7050328
How does an MTV series fit into the world of disability? The “World of Jenks”, from
award-winning documentary filmmaker Andrew Jenks, tells the story of inspirational
strangers living their everyday lives. This episode focuses on Chad, a 20 year old
living with Autism. Jenks finds that autism is not what he thought it was and
witnesses the struggles Chad encounters everyday in order for people to
understand and accept him:
http://www.mtv.com/videos/world-of-jenks-ep-2-cant-make-me-
be/1647734/playlist.jhtml
What do you think about disability, sports and the fact that losing is part of sport?
One father thinks his child should be allowed to lose in a sport, just as any child
will:
http://www.parentdish.com/2010/05/13/opinion-disabled-children-should-be-
allowed-the-dignity-of-losi/
● 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