Parent To Parent of NYS


Health Care Resources

152 Links Digest March 2019

Transition can be a time of great uncertainty. This month we provide some links to help navigate some big changes that your family may be facing. 

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151 Links Digest February 2019

Families of children with disabilities and/or special health care needs often have added expenses related to the care of their children. Here are some ways to help ease the financial burdens that families face.

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150 Links Digest January 2019

It is important that caregivers of those with disabilities have appropriate resources when working with Care Coordination Organizations/Health Homes (CCO/HH). This month's edition gives the reader the policy mandates that CCO/HH's have to follow and the methods of establishing data to determine whether an organization is bringing "value" to its members.

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149 Links Digest December 2018

It is open enrollment season for most health insurance markets, including those plans purchased through the NY State of Health Insurance Marketplace. This is the time of year when you can purchase health insurance and/or make changes to existing policies In this month's edition of Links Digest you will learn what questions you should ask when trying to select a health insurance plan that will best meet your needs. Please note that there are important dates for the NY State of Health Insurance Marketplace listed below.

Also, learn about the Developmental Disabilities Profile (DDP-2) and the role it plays in determining OPWDD services for an individual.   

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148 Links Digest November 2018

This months edition focuses on the NY State of Health Insurance Marketplace and dates for obtaining insurance. It is vitally important for consumers to know that the NYS marketplace is once again open longer than the Federal marketplace in order to ensure that consumers and small business owners have adequate time to weigh options and select plans for 2019. Please see document for specific dates regarding coverage. Also included in this edition is information on Life Plans and Health Homes under OPWDD.

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Coding and Reimbursement Tip Sheet for Transition from Pediatric to Adult Health Care

Improving transition from pediatric to adult health care is a national priority, a medical home certification standard, and a meaningful use requirement for electronic health records. Health care transition encompasses increasing youth’s ability to manage their own health and effectively use health services. It also involves ensuring an organized clinical process to prepare youth and families for adult-centered care, transferring youth to a new adult provider, and orienting and engaging young adults in their own care. This link provides CPT (Current Procedural Terminology) billing codes that can be used for time spent with patients who are transitioning from pediatric to adult healthcare.

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Disability Resources - U.S. Dept. of Labor Office of Disability Employment Policy

Looking for resources for yourself or another family raising a child (or children) with a special health care need? The website contains a number of local, state and federal resources for families of with children with special health care needs.

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Early Intervention Steps: A Parent’s Basic Guide to the Early Intervention Process

The New York State Early Intervention Program (EIP), part of the nationwide EIP, is a program for infants and toddlers under three years of age who have developmental delays, either from a disability or an unknown cause. To find out more about EIP services, check out the New York State Department of Health’s booklet entitled “Early Intervention Steps: A Parent’s Basic Guide to the Early Intervention Process”:

In English:

In Spanish:

Bridges to Health

The Bridges to Health (B2H) Home and Community-based Medicaid services waiver program is designed to provide children in foster care who have significant mental health or developmental disabilities, or health care needs, with services to help them live in a home or community-based setting.

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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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Transition to Adulthood:  A Health Care Guide for Youth and Families

Although approaching adulthood is an exciting time in any young person’s life, it is also a time of uncertainty. Like all youth approaching adulthood, individuals with special health care needs and their families need to plan for the future. This check-list thoroughly explains the many aspects to be considered when transitioning from adolescence to adulthood including worksheets for teaching one how to manage their healthcare.

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Community Health Workers and Children with Special Health Care Needs

The National Center for Community Based Services for Children With Special Health Care Needs and The HCS Foundation have collaborated to find ways of improving health and related services for children with special health care needs from traditionally underserved communities. The engagement of community health workers (CHWs) has emerged as a very promising strategy for addressing the persistent health disparities.. This report outlines the advantages of using CHW to reach families and identifies the assistance that these individuals can provide families in navigating the healthcare system.

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A Checklist to Keep Children Healthier

There are many aspects of healthcare that can be evaluated throughout a child’s development. This link provides a comprehensive list of screenings that are available to children from newborn through adolescence.

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Health for All:  Improving Health Through Medical Homes

In order to improve health outcomes and increase family involvement for patients with language or cultural barriers, providers must make sure that the care and information provided is culturally competent. While written specifically for providers treating patients in the Latino community, this information is relevant across many cultural groups.

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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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Transition Tool Kit

All individuals, regardless of the level of support needed, should have the ability to live a life filled with purpose, dignity, choices and happiness. This downloadable tool kit provides users with suggestions and options to consider on their own unique path to adulthood. While written for caregivers of children with Autism, this link is helpful to anyone transitioning from pediatric to adult healthcare and the support individuals that are assisting them on this journey.

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Got Transition

Transition is the process of moving from pediatric to adult healthcare. This will mean different things to different patients. Some switch from a pediatric provider to an adult provider, while others take an adult approach to healthcare while staying with the same provider. 

The goal is the same regardless of the approach, to encourage and empower the transitioning patient to take the most active role that they can in their own healthcare. This link provides both customizable tools for parents and professionals to address the needs of the transitioning patient as well as timelines for what should be done for the patient at different ages.

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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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Improving Preparedness for Children and Youth with Special Needs

It is important for all families to be prepared for an emergency or natural disaster; however special steps need to be taken for families of Children and Youth with Special Health Care Needs. This link provides information on what to consider when making preparations as well as useful resource links for both federal and state agencies that can help make sure that your preparations are complete.

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Vision and Hearing Screening Services for Children and Adolescents in the Medicaid Benefit

Offers improved guidelines regarding EPSDT (Early Periodic Screening Diagnostic and Treatment) in the field of vision and hearing screenings. These screenings should occur at each well-child check-up and if an issue is suspected, further follow-up and treatment should be conducted.

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Signs of ADHD at Different Ages

Attention Deficit Hyperactivity Disorder (ADHD) is not always easy to diagnose and presents differently at different ages. The link below is a checklist that parents can use the monitor their child’s development over time as they assess their child’s behavioral health.

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Oral Health and Learning:  When Children’s Oral Health Suffers, So Does Their Ability to Learn

Dental Health is an important piece of a child’s overall health that is often overlooked, particularly if a child has other health issues or is reluctant to visit a dentist. To learn why Dental Health is so important, please check out this 4-page fact sheet from the National Maternal and Child Oral Health Resource Center.

* If a child is entering grades K, 2, 4, 7 or 10, a parent may need to provide a dental health certificate. Upon request, school districts can provide a list of dental providers who offer free or low-cost dental evaluations and/or care. If you need assistance for this you can contact the NYS School Dental Foundation at (518) 465-0044.

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Pathways to Coverage, Section 4:  Medicaid, Medicaid Waivers, & Children’s Health Insurance Program

“Pathways to Coverage” is part of a larger tutorial on the basics of Medicaid and the Children’s Health Insurance Program (CHIP) developed by The Catalyst Center and updated in April 2016. Section Four explains the eligibility requirements of three different coverage options, Medicaid, Medicaid Waivers, and CHIP (Children’s Health Insurance Program) in a concise, user-friendly manner.

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What Are ABLE Accounts?

ABLE Accounts are tax-advantaged savings accounts for individuals with disabilities and their families. These accounts are set up for disability related expenses and are not counted as a resource in the determination of public benefits (SSI, SNAP, Medicaid). The following link contains information regarding eligibility and explains how these accounts work.

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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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American College of Physicians Health Care Transition Toolkits for Young Adults

The American College of Physicians (ACP), announced the release of specialized toolkits to facilitate more effective transition and transfer of young adults into health care settings. The new transition toolkits contain several condition-specific tools modeled after Got Transition's Six Core Elements of Health Care Transition.

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Find a HRSA Health Center

Use this Google Maps based tool to locate health care, even if you have no health insurance -- pay what you can afford based on your income.  Health centers provide services that include checkups when you are well, treatment when you are sick, complete care when you are pregnant, and immunizations and checkups for your children. Some health centers also provide mental health, substance abuse, oral health, and/or vision services. Contact the health center organization directly to confirm the availability of specific services and to make an appointment.

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Hands-On Activity to Identify Your Child’s Strengths

As parents of special needs kids, we are often hearing what our child does NOT do. Here is a hands-on activity for download from Understood to identify your child’s strengths. By looking at the whole individual, parents and providers can devise a comprehensive treatment plan.  

National Center for Medical Home Implementation - For Families and Caregivers

Family members are the primary caregivers and support in a child’s life. Practices and health care organizations that are family-centered provide care in equal partnership with families, caregivers, and children. This page includes tools, resources, and links to information that will assist families in successfully partnering with their child’s medical home. (If you are asked for a username and password, click cancel to bypass this screen and arrive at the resource.)

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United Healthcare Children’s Foundations Grants

United Healthcare Children’s Foundations grants provide financial help/assistance for families with children that have medical needs not covered or not fully covered by their commercial health insurance plan. The Foundation aims to fill the gap between what medical services/items a child needs and what their commercial health benefit plan will pay for.

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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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NYS Multiple Systems Navigator Website

The New York State Multiple Systems Navigator Website provides easy access to helpful health, education, human service and disability information in


 a user-friendly website. The website is designed for youth, parents, family members and caregivers.  

It covers Navigating Basic, Transition to Adulthood, Journaling Tools, a Mapping Tool and more! 

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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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Medicaid in New York State

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The Campaign to Immunzye All New Yorkers

The County Health Officials of New York have a comprehensive website, Immunyze, for parents and professionals outlining the importance of vaccinations throughout the lifespan. It includes suggestions for vaccinations schedules as well as scholarly articles to help people make informed vaccination decisions.

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146 Links Digest January 2017

This month's issue contains the Lucille Packard Foundation's powerful photographic essay capturing the experience of families raising children with special health care needs. They are accepting additional entries, so tell your story! Additional information includes tips on how to prepare for well child visits, a chart that explains the difference between a school's identification or classification of a child and a clinical diagnosis, a resource guide for families who are concerned about their child's hearing, and strategies for providing sexuality education to children and youth with disabilities.

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Links Digest #145 December 2016

Open Enrollment for insurance coverage through the Affordable Care Act is still available through January 31st, however the plans will not have a January 1st effective date. If you are already enrolled, January 31st is the deadline to make any changes to 2017 plans. Also featured this month is information on creating family health history documents, Supplemental Security Income (SSI), Autism screening services, transitioning into adulthood and more.

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144 Links Digest November 2016

Open enrollment for the Affordable Care Act is underway. For coverage to be effective as of January 1st, enrollment must be completed by December 15th. Learn more about applying for coverage through NY State of Health, care mapping, and an opportunity to provide the Centers for Medicare and Medicaid Services feedback on how to expand community-based services in this month's edition of the Links Digest.

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Links Digest #143 October 2016

Open enrollment for plans available through the Affordable Care Act begins November 1st.  Learn more about selecting a plan, and the deadlines for doing so, in this month's Links Digest.  Also featured are some great resources for assisting children with disabilities who are experiencing bullying and a comprehensive guide to air travel when your child has special health care needs.

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Transition to Work or Post-Secondary Education

Taking responsibility, and being able to advocate for one’s own future education and employment will be different for each person.  For everyone, self-direction and autonomy are desired outcomes.  For parents caring for a child and advocating for their child’s needs and education, it is a shift to be guiding a teen or young adult as they move through adolescence towards more independence.    

Crucial to this is respecting and supporting an individual’s decisions regarding their future employment or education.  With funding from NYS’ Family to Family Health Care Information Center, the information included in this publication has been developed to assist families and youth with special health care needs and disabilities in exploring work and continuing education.

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Health Care and Transition

Taking responsibility and being able to advocate for one’s own health care will be different for each person.  However, for everyone, self-direction and autonomy are desired outcomes.  For parents who have cared for a child and advocated for their child’s health care, it is a shift to be guiding a teen or young adult as they move through adolescence towards more independence.   


 Crucial to this is respecting and supporting an individual’s responsibility for their own health care and their participation in decision-making.  With funding from New York State’s Family to Family Health Care Information and Education Center, the information included in this publication was developed to assist families and youth with special health care needs and disabilities.

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THE WORLD OF WORK: Points for Students to Consider

Parent to Parent of NYS, with funding as NYS Family to Family Health Care Information Center, has developed a guide of points for youth to consider when exploring work and career options.  For a young adult with a disability, there are items to consider before building a career, exploring employment opportunities, or taking a job. To achieve success and prepare for the world of work, it is important to ask  questions and consider particular strategies.

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New York Statewide School Health Services Center (NYSSHSC)

NYSSHSC offers information that will assist parents in gaining a better understanding about health care at school, what nurses are required to do, documentation, etc.

Medicare Part D Training

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Medicare Part D Resources

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Health Insurance Booklet

Information compiled by Parent to Parent of NYS to assist families in understanding health insurance terminology and make decisions regarding their helath insurance.

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