Resource Directory for Children 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:

Care at Home Medicaid Waiver for Developmentally Disabled Children (OMRDD)

Program Goal

To provide medical assistance to families with children living at home who have severe disabilities or medical conditions.

Eligibility

  • Must be under 18 years of age
  • Have a developmental disability
  • Demonstrate complex health care needs
  • Be eligible for the level of care provided by an intermediate care facility (ICF/DD)
  • Not be hospitalized; and
  • Be ineligible for Medicaid when parents' income/resources are counted and then be determined eligible for Medicaid when parents' income and/or resources are not counted.

Description

The Care At Home waiver program allows Medicaid to pay for some services not provided through "regular" Medicaid, such as case management, respite and home adaptations. Availability of these services can make home care an option for children and their families. Although Medicaid funding obtained applies only to the child, it can be used to defray the costs of caring for the child at home.

For Information

Contact the Care At Home Coordinator at the nearest Developmental Disabilities Services Office (DDSO). The number can be found in the blue pages in the telephone directory under: New York State Government Offices, Mental Retardation and Developmental Disabilities. To obtain the name and phone number of the local DDSO, go to Developmental Disabilities Services Offices on the OMRDD Web site.

Care at Home Program for Physically Disabled Children

Program Goal

To assist families in caring for their physically disabled children in the home setting.

Eligibility

  • Must be under 18 years of age;
  • Have a determined physical disability according to standards in the Social Security Act;
  • Have an in-patient stay of at least 30 days;
  • Be ineligible for Medicaid due to the parents' excess income and/or resources;
  • Must be Medicaid eligible when parents' income and/or resources are not counted; and
  • Can be cared for at home safely and at no greater cost than in the appropriate facility.

Description

The Care at Home Program provides a Medicaid-financed plan of community-based services to enable physically disabled children who might otherwise qualify for hospital or nursing home placement to, instead, live with their families. All Medicaid and additional services, such as case management and home adaptations, are available to assist a family in caring for their child.

For Information

Call your county Department of Social Services' Care At Home coordinator. Applications are available at county DSS offices. To obtain the phone number of your county Department of Social Services, call the Growing Up Healthy Hotline at 1-800-522-5006 or go to Local Departments of Social Services on the New York State Department of Health Web site.

In New York City, call (212) 360-5444.

Child Health Plus B

Program Goal

To provide comprehensive health care services to low-income children.

Eligibility

Children, under age 19, who are New York State residents, are not eligible for Medicaid, and have little or no health insurance.

Description

Child Health Plus is offered statewide through individual insurers. An application must be completed and sent to an insurer serving the county where the child resides. Proof of the child's age, New York State residency, immigration status, household income and insurance status must be provided.

Some of the services Child Health Plus cover are: well-child care; immunizations; treatment for illness or injury; inpatient hospital medical or surgical care; physical therapy; occupational therapy; radiation therapy; short-term therapeutic outpatient services (chemotherapy, hemodialysis); limited inpatient and outpatient treatment for alcoholism and substance abuse, and mental health; prescription and non-prescription drugs if ordered by a physician; emergency care; emergency ground transportation; emergency, preventative and routine dental care ( except orthodontia and cosmetic surgery); preventive and routine vision care(including eyeglasses); speech and hearing services; and durable medical equipment; hospice services. There are no co-payments or deductibles.

Enrollment Assistance

If you would like someone to assist you in applying for Child Health Plus B, there are enrollers in your community who can help. These enrollers will help you fill out the application, collect the necessary documents, and select a health plan. In many cases, assistance is available during evenings and weekends. To learn the nearest location where application assistance is available, please call 1-800-698-4543.

For Information

Call the NYS Health Department's CHPlus hotline 1-800-698-4543 for brochures and information. Information is also available on the Child Health Plus Web site.

Children with Special Health Care Needs Program (CSHCN) Including Physically Handicapped Children's Program (PHCP)

Program Goal

To achieve a statewide system of care for CSHCN and their families that links them to appropriate health and related services, identifies and tries to resolve gaps and barriers, and promotes access to quality health care.

To enhance the delivery of quality health care to children with special health care needs through promotion of the medical home concept.

Eligibility

CSHCN are children 0-21 years who have or are suspected of having a serious or chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.

Any CSHCN residing in a county that has a CSHCN Program is eligible for information and referral services.

Description

The Children with Special Health Care Needs Program (CSHCN) is a public health program that provides information and referral services for health and related areas for families of CSHCN. In addition some of the local CSHCN programs offer case management services.

The CSHCN Program also has a financial component, the Physically Handicapped Children's Program (PHCP). The PHCP assists families in paying medical bills for children with severe chronic illnesses and/or physical disabilities, between birth and 21 years of age, who live in New York State and meet county medical and financial eligibility criteria.

The PHCP is located in most county health units. Prior authorization from the local PHCP must be obtained for all services. The PHCP has two components: the Diagnosis and Evaluation Program (D&E) and the Treatment Program. The D&E Program will reimburse specialty providers for the diagnosis and development of a treatment plan for eligible children. The Treatment Program will reimburse specialty providers for the ongoing health and related services for children who are medically and financially eligible in their county of residence. The county standards are designed to assist families with low incomes or inadequate private health insurance to obtain medical services for their children.

For Information

To inquire about what programs (CSHCN/PHCP) may be available in your county, call the New York State Department of Health's Growing Up Healthy Hotline at 1-800-522-5006 or call your local health department.

In New York City, contact the Division of Health Care Access and Improvement at (212) 676-2950.

Early Intervention Program

Program Goal

To enhance the development of infants and toddlers with disabilities and/or developmental delays, and the capacity of families to meet their special needs.

Eligibility

A child living in New York State, under three years of age, who has a developmental delay or a diagnosed physical or mental condition that has a high probability of resulting in a delay in any of the developmental areas: cognitive; physical, including vision and hearing; communication; social or emotional; or adaptive.

Description

The following services are available to eligible children: screening and evaluation; service coordination; family training; family counseling; home visits; family/parent support groups; speech pathology and audiology; vision services; physical therapy; occupational therapy; nutrition services; nursing services; psychological services; social work services; special instruction; transportation; and assistive technology devices and services. These services are provided at no cost to families and are determined on an individual basis. Third party payment, including private insurance and Medicaid, is used when available.

Following referral to the Early Intervention Program, a screening or comprehensive multidisciplinary evaluation is performed to determine a child's eligibility for early intervention services. Once eligibility is determined, a meeting takes place to develop an individualized family service plan (IFSP). IFSP meeting participants include the child's parents, the service coordinator, the county early intervention official, a representative of the team that evaluated the child, and anyone else requested by the parents. The IFSP is a written document that includes the early intervention services that will be provided to the child and family.

For Information

Call the New York State Health Department's Growing Up Healthy Hotline at 1-800-522-5006; or contact your county health department.

Family Health Plus

Program Goal

To provide comprehensive health care coverage to uninsured adults with limited income.

Eligibility

Adults, ages 19 through 64, who are New York State residents, are not eligible for Medicaid, and have no health insurance. Income must fall within the maximum allowable income level for the family size. Some other limitations may apply. While application assistance is available through health plans and community-based organizations, the local social service district in the county of residence determines eligibility.

Description

Family Health Plus is offered statewide through managed care plans. Family Health Plus provides comprehensive health insurance coverage, including:

  • physician services;
  • inpatient and outpatient hospital care;
  • prescription drugs and smoking cessation products;
  • lab tests and x-rays;
  • vision, speech and hearing services;
  • rehabilitative services (some limits apply);
  • durable medical equipment;
  • emergency room and emergency ambulance services;
  • drug, alcohol and mental health treatment (some limits apply);
  • diabetic supplies and equipment;
  • radiation therapy, chemotherapy and hemodialysis;
  • hospice services and
  • dental services (if offered by the health plan).

Income and resources must be below qualifying levels. There are no costs to join Family Health Plus and there are no deductibles or yearly fees once you are enrolled. You may be asked to pay part of the costs of some medical care/ service. This is called a copayment or a co-pay.

Enrollment Assistance

If you would like someone to assist you in applying for Family Health Plus, there are enrollers in your community who can help. These enrollers will help you fill out the application, collect the necessary documents, and select a health plan. In many cases, assistance is available during evenings and weekends. You may also apply directly at your local social service district office. To learn the nearest location where application assistance is available, please call 1-877-9FHPLUS (1-877-934-7587), or check How can I apply? on the Family Health Plus Web site.

For Information

Call the New York State Health Department's Family Health Plus Hotline at 1-877-9FHPLUS (1-877-934-7587). You may also visit the Family Health Plus Web site.

Family Support Services

Program Goal

The Family Support Services Program is designed to foster the family's ability to care for their loved one with a developmental disability at home for as long as desired.

Eligibility

Families caring at home for family members with developmental disabilities.

Description

The Office of Mental Retardation and Developmental Disabilities' family support services program funds services through not-for-profit agencies in the community and through the regional Developmental Disabilities Services Offices (DDSO). Services include: respite (day, evening, overnight); recreation (day, evening, summer/day camp); family reimbursement/cash subsidy; case management/service coordination; counseling; behavior management; financial and life planning assistance; information/referral/outreach; training; transportation; special adaptive equipment and environmental modification.

To request family support services, families may contact the regional DDSO in their area.

For Information

Contact Lori Lehmkuhl, Statewide Family Support Services Coordinator, at the New York State Office of Mental Retardation and Developmental Disabilities and Family Support and Aging Services, 44 Holland Ave. Albany, New York 12229; or call (518) 473-7037. Information is also available at Family Support Services on the OMRDD Web site.

Genetic Services Program

Program Goal

To ensure that individuals with genetic disorders, whether affected, at-risk for transmitting, or simply concerned, have access to comprehensive genetics services which include diagnostic, counseling and preventive services.

Eligibility

Any person living in New York State.

Description

New York State provides grant awards to comprehensive, noncategorical genetic centers in every health service area of the state. Every funded program is able to provide the full range of genetic services including diagnosis, laboratory testing, genetic counseling and referral to specialty treatment centers as needed by the patient and family. Third party payment, including private insurance and Medicaid, is used when available but all services are available regardless of the patient's ability to pay.

For Information

Call the New York State Department of Health's Genetic Service Program at (518) 474-7148 for information on the genetic center(s) nearest to you.

Healthy New York (Overseen by the New York State Insurance Department)

Program Goal

  • To assist small business owners in providing their employees and their employees' families with reduced cost, comprehensive health insurance coverage.
  • To offer eligible uninsured workers whose employers do not provide comprehensive health insurance coverage the option of purchasing comprehensive coverage directly through the Healthy NY program.

Eligibility

Small Business must meet certain eligibility requirements to participate.

For example:

  • The small employer must have 50 or fewer eligible employees.
  • Employers may count employees who have coverage through other sources, such as a spouse or another government program, towards the 50% participation requirement.
  • Employers must contribute fifty percent of the premium for full time employees.
  • The business must be located within NYS.

An Individual can qualify for Healthy NY if he or his spouse worked during the past year. Examples of eligibility requirements include:

  • Has not had health insurance in effect for the twelve-month period preceding application or has lost insurance due to a qualifying event such as, loss of employment, change of residence, legal separation, divorce or annulment.*
  • Is ineligible for Medicare.
  • Is a resident of NYS.
  • The applicant or spouse must demonstrate that he/she is working or has been employed in the past 12 months.

Description

Healthy NY is a program designed to make reduced cost, comprehensive health insurance available to small businesses that currently do not provide health insurance coverage to their employees. Eligible individuals who are working for employers that do not provide insurance coverage or who were recently employed may also purchase Healthy NY's reduced cost benefit package.

Healthy NY benefits include health benefits that cover essential health needs including inpatient and outpatient hospital services, physician services, maternity care, preventative health services, diagnostic and x-ray services, emergency services. Applicants may opt to include a limited prescription benefit as well. Benefits are provided on an in-network basis only.

For Information

Please see the Healthy NY Consumer Guide or visit Healthy NY for a full description of the Healthy NY eligibility requirements. You may obtain a consumer guide and application by calling 1-866-HealthyNY (1-866-432-5849).

Home and Community Based Services Waiver/Long Term Home Health Care Program (LTHHCP)

Program Goal

To provide home care services to individuals who are medically eligible for nursing home placement as an alternative to institutionalization.

Eligibility

  • Individual must be medically eligible for nursing home level of care
  • Needs can be safely met at home
  • Approved by physician
  • Individual requires coordinated services and case management
  • Cost of home care services must fall within budget cap of assessed level of care for which the individual is approved; individual budget cap is based on monthly local nursing home rate
  • Medicaid eligible

Description

The Long Term Home Health Care Program (LTHHCP) Waiver provides a coordinated plan of care and services in the home. All individuals receive Case Management and may receive other services based on assessment and individual's required services and plan of care. Services offered may include Nursing, Therapies, and Personal Care services. In addition, the waiver allows Medicaid to pay for some services not provided through "regular" Medicaid such as respiratory therapy, medical social services, nutritional counseling, home maintenance and improvements, moving assistance, respite care, home delivered meals and personal emergency response system.

For Information

LTHCCP is administered by local social service districts and services are provided by a certified Long Term Health Care Program Provider.

Call your Local Department of Social Services (LDSS) for more information. To obtain the phone number of your LDSS, go to Local Departments of Social Services on the New York State Department of Health Web site.

Home and Community-Based Services Medicaid Waiver for Individuals with Traumatic Brain Injury (HCBS/TBI)

Program Goal

To provide supports and services to assist an individual with a traumatic brain injury (TBI) to live as independently as possible in the community of their choice.

Eligibility

  • Have a diagnosis of TBI or a related diagnosis
  • Be eligible for nursing facility level of care
  • Have an in-patient stay of at least 30 days
  • Be enrolled in the Medicaid Program
  • Be 18-64 years old
  • Choose to live in the community rather than a nursing facility
  • Have or find a living arrangement which meets the individual's needs
  • Be able to be served with the funds and services available under the HCBS/ TBI waiver and New York Medicaid State Plan

Description

The HCBS/TBI waiver is accessed through a network of Regional Resource Development Centers which serve specific counties throughout the state. The Waiver provides a variety of services to support an individual in the community. Each waiver participant selects an approved Service Coordinator to assist them in the development of a Service Plan and to oversee the provision of all services selected by the participant.

HCBS/TBI waiver services include: service coordination, independent living skills training and development, structured day programs, substance abuse programs, intensive behavioral programs, community integration counseling, home and community support services, environmental modifications, respite care, assistive technology, transportation, and community transition services.

For Information

Call the New York State Department of Health HCBS/TBI at (518) 474-6580 to find the Regional Resource Development Center nearest you.

Home and Community-Based (HCBS) Waiver For Children and Adolescents with Serious Emotional Disturbances

Program Goal

To provide services and support to children and adolescents with serious emotional disturbances and their families to enable them to remain at home and in the community.

Eligibility

  • Must be between 5 and 17 years of age; enrolled prior to 18th birthday
  • Have serious emotional disturbances;
  • Demonstrate complex health and mental health needs;
  • Require or be at imminent risk of needing psychiatric inpatient care;
  • Service and support needs cannot be met by one agency/system;
  • Have a consistent and viable living arrangement with family that is able and willing to participate in the waiver;
  • Appear to be capable of being cared for in the community with access to waiver services; and,
  • Be eligible for Medicaid.

Description

The HCBS Waiver allows Medicaid to pay for some services not normally provided through Medicaid, including: care coordination; respite; family support services; intensive in home services; crisis response and skill building.

Parental income and resources are not considered when determining the child's eligibility for Medicaid. Although the Medicaid funding only applies to the child, it can be used to defray the costs of caring for the child at home.

The waiver is fully established in 40 counties and the 5 boroughs of NYC with capacity to serve 610 children. The waiver will be expanding throughout New York State to serve 876 children.

For Information

For a complete list of Provider Agencies by county, visit the Home and Community Based Services Waiver Assistance in New York State on the OMH Web site.

Home and Community Based (HCBS) Waiver for Persons, Including Children, with Mental Retardation and/or Developmental Disabilities

Program Goal

To provide services and supports for adults and children of all ages and their families to enable them to remain at home or in community residential settings.

Eligibility

  • Must have mental retardation and/or a developmental disability
  • Must meet the ICF/MR Level of Care Eligibility Criteria
  • Must be eligible for Medicaid
  • Must live at home, or in an OMRDD sponsored Individualized Residential Alternative (IRA), Community Residence, or Family care home

Description

The HCBS Waiver allows Medicaid to pay for some services not normally provided through Medicaid. For children these include: Respite, Residential Habilitation, Plan of Care Support Services, Consolidated Supports and Services, Environmental Modifications, Adaptive Devices, and Family Education and Training.

Parental income and resources are not considered when determining the child's eligibility for Medicaid.

The waiver is available in all of the State's counties and boroughs of New York City.

For Information

The HCBS Waiver is administered through the local OMRDD Developmental Disability Services Offices (DDSOs). Contact the OMRDD Office of Waiver Management at 518-474-5647 to obtain the name of the local DDSO or go to Developmental Disabilities Services Offices on the OMRDD Web site.

Medicaid

Program Goal

To increase access to health care coverage for low income individuals, families and children.

Eligibility

Medicaid is a program for low-income persons whose income and/or resources (if applicable) are below certain levels. Eligible populations include children, pregnant women, single individuals, families and individuals certified blind or certified disabled. In addition, persons with medical bills may be eligible for Medicaid even if their income and resources are above the allowable Medicaid income levels. Medicaid income and resources levels generally change on January 1 of each year. Children and families may be eligible for Child Health Plus B or Family Health Plus if they are ineligible for Child Health Plus A or Medicaid.

Description

Medicaid offers a full range of health services for eligible persons including: all regular medical checkups and needed follow-up care; immunizations; doctor and clinic visits; medicine; medical supplies; medical equipment, and appliances (wheelchairs, etc.); lab tests and x rays; eye care and eye glasses; emergency care; dental care; nursing home care; emergency ambulance transportation to a hospital; and, hospital stays. For some pregnant women, services may be limited to perinatal care if their incomes are too high to qualify for full Medicaid coverage.

For children birth to 21 years old, Medicaid offers the Child/Teen Health Program (C/THP), which offers the services listed above for all Medicaid recipients. C/THP places an emphasis on preventive care and treatment. For example, Medicaid requires that children between the ages of 36 months and 72 months of age receive a screening blood test for lead poisoning if they have not previously been screened. This program is available from fee-for-service healthcare providers, and all Managed Care plans must offer C/THP to Medicaid recipients under 21 years of age who are enrolled in their plan. Child Health Plus B and Family Health Plus provide services to eligible children and adults, respectively, through Managed Care plans, and, in some instances, indemnity plans.

For Information

Call the New York State Health Department's Growing Up Healthy Hotline at 1-800-522-5006, or contact your local county Department of Social Services. In New York City, call the Information Hotline at 311 or 1-877-472-8411.

For more information about Medicaid, visit Medicaid on the New York State Department of Health Web site.

Special Education Services

Program Goal

To ensure that a free appropriate public education and full educational opportunity in the least restrictive environment are provided to students with disabilities by:

  • making school programs more effective and improving outcomes for students;
  • ensuring that federal and state regulations are followed; and
  • ensuring the protections guaranteed to students with disabilities and their parents are enforced.

Eligibility

Children with disabilities, ages 3-21, who reside in New York State.

Description

The Office of Vocational and Educational Services for Individuals with Disabilities (VESID) provides leadership and support to ensure that federal and State special education requirements are consistently implemented throughout the State through:

  • training, technical assistance and quality assurance activities to address the needs of students with disabilities, their families, education and other appropriate personnel who provide educational programs and services to students with disabilities;
  • policy development and technical assistance to special education programs provided to students with disabilities, ages 3 through 21, in public and nonpublic schools, including school districts, BOCES, State-operated and State-supported schools, approved private schools, and Special Act School Districts, and
  • administration of 42 Special Education Training and Resource Centers, which provide technical assistance, personnel development, and resource materials to district personnel, parents, and community members to assist in the education of students with disabilities.

For Information

Contact the Office of Vocational and Educational Services for Individuals with Disabilities (VESID) for general policy issues at (518) 473-2878 or the VESID Regional Offices at the following locations:

Eastern Regional Office
Albany, NY
(518) 486-6366
Western Regional Office
Batavia, NY
(585) 344-2002
Central Regional Office
Syracuse, NY
(315) 428-3287
Hudson Valley Regional Office
Yorktown Heights, NY
(914) 245-0010
Long Island Regional Office
Lindenhurst, NY
(631) 884-8530
New York City Office
Brooklyn, NY
(718) 722-4544

Supplemental Security Income

Program Goal

To assist low-income children who are disabled or blind.

Eligibility

Children under the age of 18 (or individuals, age 18-22, who regularly attend school, college or training that is designed to prepare them for paying jobs) who meet the federal medical and financial criteria.

Description

The Supplemental Security Income (SSI) Program is administered by the federal Social Security Administration (SSA). A child under 18 may be found disabled if he/she has a physical or mental impairment or combination of impairments that causes marked and severe functional limitations, and that can be expected to last for a continuous period of at least 12 months or can be expected to result in death. Individuals, 18-22 years old, are evaluated as adults, i.e., whether they have a physical or mental impairment(s) or combinations of impairments which prevent them from working for at least 12 months or are likely to result in death.

The Social Security Administration considers parental income and resources in determining financial eligibility. Some types of income and resources are not applied. In New York State, all SSI recipients receive Medicaid.

For Information

Call or visit your local Social Security field office; or call 1-800-772-1213.

The TRAID Project

Program Goal

To help persons with disabilities to obtain needed assistive technology services and devices.

Eligibility

Services are available to individuals of all ages with disabilities, their family members, service providers, employers, educators, and others who are interested in disability issues or assistive technology.

Description

The TRAID (Technology Related Assistance for Individuals with Disabilities) Project promotes a consumer-responsive, comprehensive system of access to assistive technology usable by individuals with disabilities.

The TRAID Project helps people learn about, obtain, and be able to use assistive technology services and devices, which meet their needs. TRAID is federally funded and administered by the NYS Commission on Quality of Care and Advocacy for Persons with Disabilities (CQCAPD).

New York State residents can call the agency's toll-free telephone number (see next page) for information on many disability-related subjects, including assistive technology. The professionals who staff the information and referral line have access to:

  • SATIRN V - a resource directory that lists local service providers to meet an individual's needs;
  • AbleData - an extensive, computerized directory of assistive technology devices; and,
  • TRAID-IN Equipment Exchange program - a matching service for people wanting to list technology equipment to buy, sell or donate to others. This service is available through the OAPWD website.
  • TRAID staff are knowledgeable about the policies and procedures of available programs and funding sources for assistive technology. The Project funds Regional TRAID Centers that offer local information and referral, product demonstrations and advocacy and awareness services. These centers operate an assistive technology device lending service for infants and toddlers and their families funded by the New York State Health Department's Early Intervention Program.

For Information

Call or write to locate the nearest Regional TRAID Center, or to request materials that provide consumer tips on buying services and devices and various funding sources. Materials are offered in Spanish, Braille, and large print and on diskette as well as audio cassette.

Address:

NYS CQCAPD
TRAID Project
401 State Street
Schenectady, NY 12305

Phone:

(800) 624-4143 (Voice/TTY/Spanish)
(518) 388-2877(Voice/TTY)
(518) 388-2890 (FAX)

* For a complete list of exceptions please see the Healthy NY Web site.