Resource Directory for Children and Young Adults with Special Health Care Needs

"Resource Directory for Children with Special Health Care Needs" is also available in Portable Document Format (PDF) in the following languages:

Table of Contents

SECTION I:

Health Insurance and Income Assistance Programs

Waiver Programs (Medicaid)

SECTION II

Education, Health, and Support Services Programs

Introduction

This resource directory is for the families of children and young adults who have a serious illness or long-lasting condition for which they need extra health care and support services.

Children and young adults with special health care needs might have a serious or long-lasting:

  • Physical condition.
  • Intellectual or developmental disability.
  • Behavioral or emotional condition.

A few examples of such conditions include cerebral palsy, muscular dystrophy, asthma, sickle cell anemia, diabetes, heart conditions, depression, mental retardation or developmental disability, conduct disorder, autism, and attention deficit hyperactivity disorder (ADHD).

In this directory you'll find programs to help your family obtain and pay for the special services you might need. This directory can point you in the right direction, but it can't answer all your questions. For the programs that interest you, please call the phone numbers at the end of each section to talk to a staff person.

You can find more information about these and other programs at the NYS Department of Health website: www.health.ny.gov/community/special_needs

This directory is available in English, Spanish, Chinese, Russian, French, Italian, Korean and Polish. These can be downloaded at the above website.

To order copies of this directory, send a request to:

  • NYS Department of Health Distribution Center
    21 Simmons Lane, Menands, NY 12204
    Fax: (518) 465-0432
    E-mail: B0019W@health.state.ny.us

Be sure to include the name of the publication you are requesting, including the language.

Words to Help You Use This Directory

Adaptive Devices and Assistive Technology:
Technology and tools that have been changed so that people with disabilities can more easily use them. Examples include phones with text, speech recognition software, cars with lifts, and extra large keyboards.
Developmental Disability:
A physical or mental condition, such as Down syndrome, autism, cerebral palsy, vision or hearing impairment, that has a high chance of leading to a developmental delay. A "delay" means that the child is behind in at least one area of development (physical, mental, communication, social, or emotional), compared to what is typical for children of his or her age.
Environmental Modifications:
Changes in the home and community to increase safety and independence. They can include grab bars in bathrooms, wider doorways, and wheelchair ramps.
Eligibility:
Programs set rules about who is able to receive services and who is not. People who can receive services are "eligible" for services, and those who cannot are "ineligible." Eligibility is often based on such things as income, age, health condition and location.
Growing Up Healthy Hotline:
A phone number you can call to get more information for any program in this directory. An operator will help you identify the services you need and provide information on how to locate a provider in your area. This hotline provides information and referral 24 hours/day, seven days a week in English, Spanish and other languages. All calls are confidential.
Call 1-800-522-5006, or through TeleTYpewriter (TTY) access at 1-800-655-1789.
Medicaid:
A government program that pays for health care services for people with low income and resources.
Medicaid Waiver:
The Medicaid Waiver programs in this booklet "waive" or remove some of the usual requirements for getting Medicaid services. The purpose of waiver programs is to help people stay in their home community by paying for home and community-based services, instead of institutional care.
Waiver programs for children in New York State include:
  • Care at Home
  • Home and Community-Based Services (HCBS)
  • Bridges to Health

The names for the waiver programs in this booklet start with one of the three titles above, and end with the name of the special group of people they serve. For example: "Care at Home Medicaid Waiver for Developmentally Disabled Children."

Respite Care:
A time of rest or relief for the caregiver. A trained person provides companionship and supervision for a person who needs extra help, allowing the caregiver time to take care of themselves.
TTY:
TTY stands for TeleTYpewriter, which is a keyboard phone service that helps people with hearing or speech difficulties communicate on the phone.

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Supported in part by project #D70MC06893 from the Health Resources and Services Administration, Department of Health and Human Services.

Publication 0548
Revised 10/2013