Advocacy

 

 

                              Parent to Parent of NYS New York's Family to Family

 Health Care Information and Education Center

The Social Security and Disability Resource Center website (SSDRC.com) provides a detailed overview of how the federal disability system works (social security disability and SSI) and also provides answers to many questions that applicants typically have, but often have trouble finding answers to. For the most part, the site is based on the author's personal experience as a former disability-medicaid caseworker, and also as a former disability examiner for the social security administration.       http://www.ssdrc.com/

 

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.

1. Advocacy 101 items that help strengthen advocacy  skills

(Communication skills, parenting skills, letter writing, speaking  with professionals, asking questions)

Ten reasons that school districts say "no" to parents

http://www.fetaweb.com/02/10_reasons.no.htm

Defining many different approaches to advocacy, including team  advocating and self advocacy

http://www.arcnm.org/index.php/selfdet_selfadvoc/summary/C115/

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)

The Internal Revenue Service tells you all about deductible medical expenses.

http://arthritis.about.com/gi/dynamic/offsite.htm?
 

3. 504 Accommodation Plans related to Health Conditions (i.e. what are the legal obligations of schools to provide health-related services and therapies? Accommodations needed for equal access)

Sample 504 plan for a student with diabetes
http://www.diabetes.org/advocacy-and-
legal resources/discrimination/school/504plan.jsp

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?

Center for Consumer Health Care Information tells you who does what and what the guidelines are for medical professionals to follow.
http://www.health.state.ny.us/nysdoh/healthinfo/

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?)

See this National Autism Association article on Family First, which was launched to provide couples within the community a way to access counseling in an effort to help couples with children with autism stay together in times of stress

http://www.nationalautismassociation.org/familyfirst.php

A comprehensive review of cultural diversity literature as it pertains to individuals with disabilities:

http://www.ncd.gov/newsroom/advisory/cultural/pdf/cdi_litreview.pdf

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.

Worksheet to help parents prioritize for doctor visitsthe website is for CHARGE syndrome, but the worksheet has broader application

http://www.chargesyndrome.org/manual/Medical.pdf

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 providers 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?

Partnering with your child's teacher:

http://www.schwablearning.org/articles.aspx?r=802

Parents raising awareness about their children for classroom teachers:

http://www.schwablearning.org/articles.aspx?r=1112

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

Understanding Medicaid Service Coordinations. This is an 8 page booklet that explains Medicaid Service Coordination and is available for download.

http://www.parenttoparentnys.org/Services/MSC/mscbooklet.htm

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 health-related services and therapies?

New Medicare Rule Cuts Reimbursement for Class of Non- Hodgkins Lymphoma Treatments
http://www.medicalnewstoday.com/articles/91160.php

AMA Opposes Cost Shift For Reversal Of Medicare Physician Fee Cut

http://www.medicalnewstoday.com/articles/91158.php

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).

Tips on transition and helping your child with a disability adjust to issues in puberty:

http://www.autism-society.org/site/DocServer/LWA_Puberty.pdf?
 

11.Advocacy 101 items that help strengthen advocacy skills

(Communication skills, parenting skills, letter writing, speaking
with professionals, asking questions)

From feeling like a victim to being an effective advocate:

http://www.wrightslaw.com/info/advo.susan.success.htm

Advocating Through Letter Writing a guide for parents regarding
written communication. Letters.we get stacks and stacks of letters.

http://parenttoparentnys.org/Family2Family/Advocacy/advocatingletter.h
tm

12. 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)

Future planning for special medical needs:

http://wash.k12.mi.us/perform/Documents/Planning_Medical.pdf

Do you know about "Healthy New York"? It's for individuals and
families too! The Healthy NY program is designed to assist small
business owners in providing their employees with health insurance,
however, uninsured sole proprietors and workers whose employers do
not provide health insurance may also purchase comprehensive coverage
directly through the Healthy NY program at a lower cost than a
direct/private plan.

http://www.ins.state.ny.us/website2/hny/english/hny.htm

13. 504 Accommodation Plans related to Health Conditions (i.e. what
are the legal obligations of schools to provide health-related
services and therapies? Accommodations needed for equal access)

My Child with a 504 Plan is Failing, School Won't Help

http://www.wrightslaw.com/info/sec504.idea.eligibility.htm

Section 504 Fact Sheet - a quick guide to understanding Section 504
Civil Rights Legislation available in English and Spanish

http://parenttoparentnys.org/Family2Family/Fact%
20Sheets/section504.html

14. 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?

Access to records in NYS. A Guide for Individuals Receiving Services
and Other "Qualified Persons"
http://www.cqc.state.ny.us/Brochures/Access-to-MH-Records.htm

Is your child's physician/other provider "family friendly"?

Family friendly is a term that applies to how and to what extent
organizations involve, welcome, and value the participation of family
members in every aspect of the organization

The checklist for families can be found at:

http://olrs.ohio.gov/Other/checklistfamily.pdf

Confused by complex health care terminology? Plain language in health
care: philosophy and glossary:

http://www.plainlanguage.gov/

15. 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?)

"Group Parent Power"-- see how it can work:

http://wash.k12.mi.us/perform/Documents/Use_Group_Parent_Power.pdf

A comprehensive "how to" publication form NICHCY on accessing parent
support groups:

http://www.nichcy.org/pubs/parent/pa10txt.htm

Coping strategies for family stress:

http://www.fcs.msue.msu.edu/ff/pdffiles/familystress3.pdf

16. 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.

An article giving additional perspective on the significance of
record keeping:

http://www.iancommunity.org/cs/articles/the_importance_of_record_keepi
ng

17. 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 providers 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?

Remember that problem-solving in a collaborative venture will

best achieve our common goal - that of becoming a positive

driving force toward family-centered, community-based care.

http://wash.k12.mi.us/perform/Documents/PARENT_PROFESSIONAL_COLLABORAT
ION.pdf

18. Understanding Medicaid funded Waiver Services (Including the
philosophy of individual and family-centered supports)

Did you know that parents and caregivers can take OMRDD trainings to
gain an understanding of waiver services and how they should work?
The trainings are available throughout NYS at no cost. See the
catalogue, here:

http://www.omr.state.ny.us/wp/index.jsp

with a link to the next waiver training, here:

http://www.omr.state.ny.us/wp/wp_catalogp1014.jsp

(If this location is not convenient, call for other opportunities.)

What is family-centered care when it comes to pediatric health
services?  Read a comprehensive discussion here:

http://aappolicy.aappublications.org/cgi/content/full/pediatrics;112/3
/691

19. 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 health-related services and therapies?

What to do when your request to your insurance company for a specific
treatment is denied; grievance and more:

http://www.ins.state.ny.us/website1/inshelp/c_denial.htm

20. 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).

Check out this neat "Adolescent Autonomy Checklist" to assess
progress for your transitioning child's health care and life skills:

http://www.spannj.org/Family2Family/adolescent_autonomy_checklist.htm



Other Links and Information


Schneider Children's Hospital at North Shore Children's Health
Library:

http://www.schneiderchildrenshospital.org/sch_child_library.html

See what's going on nationally in clinical trails (search by condition):

http://www.clinicaltrials.gov/
 

Understanding the concerns of siblings of children with special needs:

http://www.archrespite.org/archfs23.htm

The Family Medical Leave Act: protections for parents of children
with medical issues:

http://www.wrightslaw.com/advoc/articles/fmla.protect.spolter.htm



Have you found valuable links that you would like to share?  Please send them to Lisa Terenzio at lisasdesk@verizon.net

Phone: 1-631-434-6196 or 1-800-559-1729  our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director

Parent to Parent of NYS

P.O. Box 1296

Tupper Lake, NY 12986

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 102 November 1, 2010

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


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
 
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
http://www.cancer.gov/ncicancerbulletin/051810/page5



1. Advocacy 101 - items that help strengthen advocacy skills
-

(Communication skills, parenting skills, letter writing, speaking with
professionals, asking questions)



Healthy Transitions offers a video on how to help someone with a
developmental disability prepare for surgery. The video,  Preparing for
an Operation, can be found in the Scheduling an Appointment
section on their video page:

http://www.healthytransitionsny.org/skills_media/video_show
http://www.healthytransitionsny.org/skills_media/video_show



The following link provides information about preparing for a Social
Security disability benefits or SSI disability benefits hearing:

http://www.disabilitysecrets.com/disability-reflection-10.html
http://www.disabilitysecrets.com/disability-reflection-10.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)



The following article discusses various types of Managed Care Plans and
their impact on children 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
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/
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
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
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:

http://www.nysccc.org/ www.nysccc.org



November is also a time to recognize military families. The National
Defense Authorization Act (NDAA) for Fiscal Year 2010 has expanded the
Exceptional Family Member Program (EFMP). This program identifies service
members who have family members with special medical or educational needs
and determines whether these needs can be met at a new location when the
service member is being considered for an assignment overseas. Under the
expansion increased information and referral services will be available and
families moving within the states will also be served:


http://blog.govdelivery.com/usodep/2010/07/department-of-defense-exceptiona
l-family-member-program.html>
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
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?)




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
http://ici.umn.edu/products/impact/191/over2.html



Understanding cultural disparities and cultural diversity is important while
providing support and assistance to families. The following article
provides some current statistics and perspective on cultural disparities as
it relates to family-centered care:


http://esciencenews.com/articles/2010/05/19/study.finds.racial.ethnic.dispa
rities.family.centered.care.kids.with.special.health.needs
http://esciencenews.com/articles/2010/05/19/study.finds.racial.ethnic.dispar
ities.family.centered.care.kids.with.special.health.needs



6. Keeping Records is a learned skill. Parents will learn
what kinds of records are important and how to record necessary information.
Your childs health care providers rely on your records to help them make
sound medical recommendations.



Open Notes is a demonstration project started in the summer of 2010 which
studies the effect of increased transparency in the medical record.
Approximately 100 physicians 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/   http://www.myopennotes.org/


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
http://cshcn.org/planning-record-keeping



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?


The following link provides some tips for communicating effectively with
your childs health care providers:


 
http://www.medicalhomeportal.org/living-with-child/caring-for-children-with
-chronic-conditions/managing-and-coordinating-care/communication-guide
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 childs care during
hospitalizations:

http://www.reuters.com/article/idUSTRE65R4A620100628
http://www.reuters.com/article/idUSTRE65R4A620100628



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



Changes in how Medicaid Service Coordination services are delivered to
eligible families took effect on October 1, 2010. OPWDD (Office for People
with Developmental Disabilities) provides information regarding the new
program framework and associated changes here:

http://www.omr.state.ny.us/images/hp_msc_framework.pdf
http://www.omr.state.ny.us/images/hp_msc_framework.pdf



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/ComparisonOfWa
ivers.pdf
http://www.ccf.state.ny.us/Initiatives/ChildPlan/cpResources/ComparisonOfWai
vers.pdf



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
health-related services and therapies?



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
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
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).



"Embedding Health Outcomes in the Individualized Education Program" is a
video recording of a 40 minute teleconference that provides information and
specific examples 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
http://dpimedia.wi.gov/main/Viewer/?peid=f44dfa70439241dd85e99cce0cb70e26



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
http://www.seacoastonline.com/articles/20100705-NEWS-7050328



11. Fathers - from Jim Swart, Fathers Network Coordinator



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/playl
ist.jhtml
http://www.mtv.com/videos/world-of-jenks-ep-2-cant-make-me-be/1647734/playli
st.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-al
lowed-the-dignity-of-losi/>
http://www.parentdish.com/2010/05/13/opinion-disabled-children-should-be-all
owed-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
Education
s Office of Special Education Programs (OSEP), Project Forum at the National
Association of State Directors of Special Education (NASDSE) surveyed all
states to examine their current practices regarding the implementation of
standard-based IEPs. Standard-based IEPS are developed around the framework
of state grade-level academic standards. 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 not using, implementing, or developing a
standards-based IEP:

http://projectforum.org/docs/Standards-BasedIEP-ImplementationUpdate.pdf
http://projectforum.org/docs/Standards-BasedIEP-ImplementationUpdate.pdf



The California Department of Developmental Services provides this guide to
adaptations, changes, and tools that can be used to support the
participation of those with developmental disabilities on boards and
committees. Editors note: it would have been preferable if the guide
was
entitled Ways to Make Complex Information Understandable
http://www.dds.ca.gov/ConsumerCorner/WaysComplex.cfm
http://www.dds.ca.gov/ConsumerCorner/WaysComplex.cfm





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