Parent To Parent of NYS


Health Care Resources

Families as Partners

Addressing Consumer Priorities in Value-Based Care

"Addressing Consumer Priorities in Value-Based Care” is a publication outlining how consumers and consumer advocates can be included in health care system redesign in a meaningful way. The document presents a strategy to get those most affected by the redesign to take an active role in the process.

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New Guidance Makes It Easier for Families of Children with Special Needs to get Medical Records

The Department of Health and Human Services (HHS) has issued new guidance on HIPAA (the Health Insurance Portability and Accountability Act). This guidance will assist families of children with disabilities to obtain medical records, including waiving fees and sharing with third parties if requested.

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Complex Child

“Complex Child” is a monthly on-line magazine with articles written by parents and caregivers of children with special health care needs and disabilities. These articles are intended to be informational by sharing the personal experiences of parents in a language that is easily understood. 

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How Learning Disabilities Make Children Vulnerable to Depression

While nearly everyone experiences feelings of sadness and periods of "the blues," people with learning disabilities have a greater risk of developing clinical depression than the general population. In fact, the stress of coping with a learning disability may lead to more frustration that can give rise to episodes of depression. This link provides signs of depression that can be discussed with a child’s physician or mental health counselor

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Back-to-School Introduction Letters

Back to school is a stressful time for both children with special health care needs and their parents. Click on this link to download letters that students can use to give teachers information about the student’s disability or special health care need and how it affects their classroom experience.

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Understanding Genetics: A Guide for Patients on Whole Genome and Whole Exome Sequencing

Whole Genome Sequencing and Whole Exome Sequencing are two options for genetic testing that can provide patients and their families with answers regarding the causes of suspected genetic or inherited diseases. This Genetics Fact Sheet by NYS Dept. of Health and New York - Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) also explores the idea of unwanted secondary results and provides questions to consider before submitting to this type of extensive testing. Both of these points should be discussed with your physician.

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How To Raise Concerns About a Child’s Speech and Language Development: Do’s and Don’ts

When should a caregiver be concerned about a child’s speech and/or communication difficulties? This link has some advice on how to address speech and language development from a caregiver perspective and has practical advice on the questions to ask yourself and your child’s physician.

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Does It Run in the Family?  A Guide to Family Health History

It is important to know your family health history when discussing healthcare with your provider. Using this toolkit a family member can capture information on heredity, diet, environment, and patterns of disease. Family health history tells more than just what diseases run in a family. It includes information about where the family has lived and what kind of work and activities they do. This tool by Genetic Alliance can help families and physicians alike see potential health risks and plan a course of action.

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What Parents Wish Providers Knew

Parents of children with special health care needs share what they feel medical professionals don’t know, but should.

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