links digest, november 2010

8/8/2019 Links Digest, November 2010

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Parent to Parent of NYS November 1, 2010 1

Paren t t o Paren t o f NYS

New York ' s Fami l y t o Fam i l y

Hea lth Ca re I n fo rm a t i on and Educa t i on Cen te r

And NYS Af f i l i a t e Organ iza t ion o f Fam i ly Vo ices

L inks D igest - Vo lume 102 Novem ber 1 , 2010 As part of the Family to Family Health Care In formation 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.

H ea l t h Re f o r m I m p l em e n t a t i o n

The Joint Center for Political and Economic Studies has issued a report detailinghow health care reform addresses the issue of racial disparities in health relatedservices and health care outcomes. The report entitled: The Patient Protectionand Affordable Care Act of 2010: Advancing Health Equity for Racially andEthnically Diverse Populations is available for download at no charge from theirwebsite: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 topay for routine care regardless of whether an insured is participating in a clinicaltrial. This means that care that would have been covered under the healthinsurance policy if the insured was participating in a standard treatment must becovered even if they elect to enroll in a clinical trial. This applies to all clinical trialsthat treat cancer or other life-threatening diseases:http://www.cancer.gov/ncicancerbulletin/051810/page5

1. Advocacy 101 items that help strengthen advocacy skills (Communication skills, parenting skills, letter writing, speaking w ith

professionals, asking questions)

Healthy Transitions offers a video on how to help someone with a developmentaldisability prepare for surgery. The video, Preparing for an Operation, can befound in the Scheduling an Appointment section on their video page:http://www.healthytransitionsny.org/skills_media/video_show


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The following link provides information about preparing for a Social Securitydisability benefits or SSI disability benefits hearing:http://www.disabilitysecrets.com/disability-reflection-10.html

2. Financing issues health insurance and other w ays to financethe costs of needed services (including grievances, denials and appeals

i.e. Strategies for Appealing Health P lan Decisions)

The following article discusses various types of Managed Care Plans and theirimpact on childrens health care. It includes a discussion of issues related toaccess, 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 dentalcoverage:http://www.cms.gov/CHIPDentalCoverage/

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

The Oley Foundation has outlined the importance of having an Individual HealthPlan (IHP) for students with chronic health conditions. Although an IHP is not alegal document, if its included in your Childs IEP or 504 Plan it becomes part ofthat legal document. An IHP expands upon the health condition and how it relatesto 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 theschool hires a school nurse, NYS Education law requires that they must hire aRegistered Professional Nurse (RN). In this position statement, the NYS Associationof School Nurses advocates that Licensed Practical Nurses (LPNs) can also play avaluable role under the supervision of a RN:http://www.nysasn.org/LPNPositionStatement.pdf

4. Who helps with w hat? Which state agencies are involved in healthcare and health coverage? What do medical and managed care terms

mean? What should families look for in selecting a provider? Whatquestions should families ask?

November is National Adoption Month. The NYS Citizens Coalition for Childrenprovides support, information and advocacy for foster and adoptive parents andprofessionals in New York State, including those caring for children withdevelopmental disabilities and special health care needs:www.nysccc.org

November is also a time to recognize military families. The National DefenseAuthorization Act (NDAA) for Fiscal Year 2010 has expanded the Exceptional Family


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Member Program (EFMP). This program identifies service members who havefamily members with special medical or educational needs and determines whetherthese needs can be met at a new location when the service member is beingconsidered for an assignment overseas. Under the expansion increased informationand referral services will be available and families moving within the states will alsobe served:http://blog.govdelivery.com/usodep/2010/07/department-of-defense-exceptional-family-member-program.html

5. Parent-to-parent support skill-building (How can parents providesupport 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,know ledgeable, and confident in caring for their child w ith special healthneeds?)

Supporting Family Life for Children with Disabilities: What We Know and Don'tKnow discusses children with disabilities within the child welfare system,specifically the difficulties in identifying and meeting their needs within the contextof families:http://ici.umn.edu/products/impact/191/over2.html

Understanding cultural disparities and cultural diversity is important while providingsupport and assistance to families. The following article provides some currentstatistics and perspective on cultural disparities as it relates to family-centeredcare:http://esciencenews.com/articles/2010/05/19/study.finds.racial.ethnic.disparities.fa

mily.centered.care.kids.with.special.health.needs

6. Keeping Records is a learned skill. Parents w ill learn what kinds ofrecords are important and how to record necessary information. Yourchilds health care providers rely on your records to help them make sound

medical recommendations.

OpenNotes is a demonstration project started in the summer of 2010 which studiesthe effect of increased transparency in the medical record. Approximately 100physicians and 25,000 patients have agreed to share information electronically,including electronic access to the medical record for 12 months. Learn more here:http://www.myopennotes.org/

The Center for Children with Special needs at Seattle Childrens Hospital has avariety of record keeping systems available, many of which help your child becomeinvolved in the process:http://cshcn.org/planning-record-keeping

7. Parent-professional collaboration strategies. How can families workw ith their health care provider to secure quality care and coverage for


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their child? How can health care provider and families communicate moreeffectively? What are effective health advocacy strategies? What is

a medical home and how can parents access it for their child with specialhealth needs?

The following link provides some tips for communicating effectively with your childshealth 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 getparents more involved in decisions about their childs care during hospitalizations:http://www.reuters.com/article/idUSTRE65R4A620100628

8. Understanding Medicaid funded Waiver Services (Including thephilosophy of individual and family-centered supports)

Changes in how Medicaid Service Coordination services are delivered to eligiblefamilies took effect on October 1, 2010. OPWDD (Office for People withDevelopmental Disabilities) provides information regarding the new programframework and associated changes here:http://www.omr.state.ny.us/images/hp_msc_framework.pdf

A comparison of Home and Community Based Services Waivers offered through theOffice of Mental Health, OPWDD, and the Bridges to Health program (for children infoster care or under the supervision of the Division of Juvenile Justice andOpportunities for Youth) is offered here:http://www.ccf.state.ny.us/Initiatives/ChildPlan/cpResources/ComparisonOfWaivers

.pdf

9. Legal information - what are the rights of children to medicalcoverage under Medicaid, SCHIP , fee-for-service coverage. How canfamilies use complaint, arbitration, and grievance procedures to resolve

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

The Office of Mental Health offers this guide to patient rights for those who receiveoutpatient 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 receiveinpatient mental health services:http://www.omh.state.ny.us/omhweb/patientrights/InRtsWeb.pdf

10. Transition from Pediatric to Adult Health Care and Self Determinationin Health Care (the important leadership role that individuals w ithdisabilities and their families must play in moving from pediatric to adult

health care).


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"Embedding Health Outcomes in the Individualized Education Program" is a videorecording of a 40 minute teleconference that provides information and specificexamples of health related goals for an IEP. This recording is available, at no cost,from the Wisconsin Department of Public Instruction web site:http://dpimedia.wi.gov/main/Viewer/?peid=f44dfa70439241dd85e99cce0cb70e26

New Hampshire's Center for Medical Home Improvement has been awarded $1.3million by the federal government to create a National Health Care TransitionCenter for Youth with Special Health Care Needs. Mallory Cyr is working with thecenter and shares some of her experiences in making the transition to adult careproviders and college as a young adult with chronic health issues here:http://www.seacoastonline.com/articles/20100705-NEWS-7050328

11. Fathers from Jim Swart, Fathers Network CoordinatorHow 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 inspirationalstrangers living their everyday lives. This episode focuses on Chad, a 20 year oldliving with Autism. Jenks finds that autism is not what he thought it was andwitnesses the struggles Chad encounters everyday in order for people tounderstand 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 childwill:

http://www.parentdish.com/2010/05/13/opinion-disabled-children-should-be-allowed-the-dignity-of-losi/

12. Other Links:The following information may be of interest to families of children with IEPs.Under a cooperative agreement with the U.S. Department of Educations Office ofSpecial Education Programs (OSEP), Project Forum at the National Association ofState Directors of Special Education (NASDSE) surveyed all states to examine theircurrent practices regarding the implementation of standard-based IEPs. Standard-based IEPS are developed around the framework of state grade-level academicstandards. A summary of what was learned in the study is available here. A total

of 41 states responded; NYS was one of 5 states that indicated they were notusing, implementing, or developing a standards-based IEP:http://projectforum.org/docs/Standards-BasedIEP-ImplementationUpdate.pdf

The California Department of Developmental Services provides this guide toadaptations, changes, and tools that can be used to support the participation ofthose with developmental disabilities on boards and committees. Editors note: itwould have been preferable if the guide was entitled Ways to Make Complex


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Information Understandablehttp://www.dds.ca.gov/ConsumerCorner/WaysComplex.cfm

The Early Intervention Partners Training Project is scheduled to be held in SaratogaSprings for the Northeast Region (Albany, Clinton, Columbia, Essex, Franklin,Fulton, Greene, Hamilton, Montgomery, Otsego, Rensselaer, Saratoga,Schenectady, Schoharie, St. Lawrence, Warren, and Washington counties). Formore information go to http://www.eifamilies.com/training.asp

Have you found valuable links that you would like to share?Please send them to Michele Juda [email protected]

If you would like to speak to someone regarding your child with specialhealth 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 protected]

our website at w w w . p a r e n t t o p a r e n t n y s . o r g

Jan ice Fi tzger a ld , Execu t i ve D i rec to r , Paren t to Paren t o f NYS

P.O. Box 12 96 , Tupp er Lake , NY 129 86

links digest, november 2010

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