Advocacy
Parent to Parent of NYS New York's Family to Family
Health Care Information and Education Center
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.
Defining many different approaches to advocacy, including team advocating and
self advocacy
http://www.arcnm.
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.
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
legal resources/
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.
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.national
A comprehensive review of cultural diversity literature as it pertains to
individuals with disabilities:
http://www.ncd.
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.chargesy
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.schwable
Parents raising awareness about their children for classroom teachers:
http://www.schwable
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.parentto
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.medicaln
AMA Opposes Cost Shift For Reversal Of Medicare Physician Fee Cut
http://www.medicaln
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-
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.schneide
See what's going on nationally in clinical trails (search by condition):
http://www.clinical
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.
Phone: 1-631-434-6196 or 1-800-559-1729 our website at
www.parenttoparentn
Janice Fitzgerald, Executive Director
Parent to Parent of NYS
P.O. Box 1296
Tupper Lake, NY 12986