CDC does not study education or treatment programs for people with mental retardation and does not provide direct services to people with mental retardation or their families. However, CDC offers the following suggestions about where you can get more information on resources for people affected by mental retardation.

*First, talk with your child's doctor or teacher if you are concerned about how your child is developing.

*The National Information Center on Children and Youth with Disabilities (NICHCY) has put together resource sheets that list key programs for children with developmental problems and their families in each state. The lists include state agencies serving children and youth with disabilities, state chapters of disability organizations and parent groups, and parent training and information projects. [View the NICHCY Resource Sheet for your state] You can also call NICHCY at 800-695-0285 to talk with a staff person about your questions or concerns, or email them at nichcy@aed.org.

*Every state provides education services for children who have developmental problems. These programs can start right after a baby is born and last until a young adult turns 22 years old. You can find out more about these programs from the following resources:
oU.S. Department of Education (DOE)
The DOE has written a guide to help parents, teachers, and education agencies put Individualized Education Programs (IEP) in place for children (including preschoolers) with disabilities. [View "A Guide to the Individualized Education Program"]

The DOE web site also has an article on parents' rights and responsibilities in the special education process. It includes suggestions of ways a parent can have input into the Individualized Family Service Plan (IFSP) or their child's Individualized Education Program (IEP). [View "Rights and Responsibilities of Parents of Children with Disabilities"]

oNational Information Center on Children and Youth with Disabilities (NICHCY)
NICHCY has written a guide for parents on how to get early intervention services for children ages birth to 3 years, and special education services for children ages 3 to 5 years. The guide is available in both English and Spanish.
[In English: Parent's Guide to Accessing Programs for Infants, Toddlers, and Preschoolers with Disabilities]
[En Español: Guía para Padres: Programas para Infantes y Niños Pre-escolares con Discapacidades]

Another NICHCY publication answers questions and concerns that parents, teachers, and others who work with children with disabilities have about the Individuals with Disabilities Education Act (IDEA). IDEA is the federal law that supports special education and related services for children and youth with disabilities. This publication is available in both English and Spanish.
[In English: Questions and Answers about IDEA]
[En Español: Preguntas y Respuestas Sobre IDEA]

NICHCY has also written an article on the educational and civil rights of children and youth with disabilities through age 21 years. The article focuses on the IDEA, Section 504 of the Rehabilitation Act of 1973, and the Carl D. Perkins Vocational Education Act. It is available in both English and Spanish.
[In English: The Education of Children and Youth With Special Needs: What Do the Laws Say?]
[En Español: Educación de Niños con Discapacidades: ¿Que Dicen las Leyes?]

*Financial help may be available for health care.

oChildren's Health Insurance Program
Each state has a Children's Health Insurance Program that provides free or low-cost health insurance for eligible children. The Insure Kids Now! Web site has basic facts about these programs. It also has links to every state's insurance program for children, where you can learn who is eligible for the program, how to apply, and what services are covered. Information is available in English and Spanish.
[In English: Insure Kids Now! | Your State's Program]
[En Español: ¡Asegure a sus Hijos Ahora! | El Programa de su Estado]

oMedicaid
People of all ages who have disabilities may be eligible for health care coverage through Medicaid. Each state runs its own Medicaid program. The Centers for Medicare & Medicaid Services Web site has general information about Medicaid, including who is eligible and what services are provided. It also has the Web address for each state's program. [Go to the Centers for Medicare & Medicaid Web site] [Find the Web site for your state's Medicaid program]

*People with mental retardation may be helped by using assistive technology (AT). AT is any item that helps a person do things in their daily life. Examples of AT devices include a keyguard that helps children find the right keys on a computer keyboard, a simpler remote control for a TV or stereo, an adapted mouse that makes computer navigation easier, switches that help children play with toys, and talking books.

oThe National Institute on Disability and Rehabilitation Research (NIDRR)
NIDRR funds state projects that work to help people of all ages with disabilities get access to AT devices and services. [Find the NIDRR assistive technology project in your state and visit the project's web site]

oMEDLINEplus: Assistive Devices
MEDLINEplus is an online service of the National Library of Medicine. It is designed to link users to information on specific health topics including assistive devices. MEDLINEplus brings together information from many sources and is updated every day. The site includes general information about assistive devices, plus links to information about funding, research, specific conditions, dictionaries, organizations, statistics, and children, teenagers, and seniors. Some information is available in Spanish.
[In English: MEDLINEplus Health Information: Assistive Devices]
[En Español: MEDLINEplus Información de Salud: Aparatos de asistencia]

How can we improve the health of people with mental retardation?

Closing the Gap:
A National Blueprint to Improve the Health of Persons with Mental Retardation
People with mental retardation grow up and grow older and need good health and good health care, just like any other person. But people with mental retardation may face extra problems in staying healthy and in finding the right health services when they are sick. In December 2001, the U.S. Surgeon General held a conference on health disparities and mental retardation. "Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation" is the official report from that conference. The report identifies problems and proposes solutions. It sets goals in several areas to improve the health of people with mental retardation, including: health promotion and community environments, knowledge and understanding, quality of health care, training health care providers, health care financing, and sources of health care. [View the complete report and related materials on the Surgeon General's Health Disparities and Mental Retardation web site]

The National Women's Health Information Center: Women with DisAbilities
Twenty-six million American women are living with disabilities, including with mental retardation (Source: U.S. Department of Health and Human Services). The Office of Women's Health in the Department of Health and Human Services has created a special section on their National Women's Health Information Center web site devoted to information and resources for women with disabilities. The web site covers many topics, including access to health care and breast health services, reproductive health, parenting, and special issues affecting older women, as well as materials on different types of disabilities. [Go to the Women with DisAbilities web site]

Follow-Up Study of Children with Developmental Disabilities

In the mid-1980s, CDC conducted the Metropolitan Atlanta Developmental Disabilities Study (MADDS), a study of developmental disabilities (including mental retardation) in 10-year-old children living in metropolitan Atlanta. A comparison group of children who did not have any disabilities also took part in the study. The Follow-Up Study of Children with Developmental Disabilities contacted many of the original study participants years later, when they were young adults. They were asked questions about their health, living arrangements, socialization, employment, quality of life, service utilization, and independence. We have started analyzing the information collected in the Follow-Up Study and will be looking at such issues as what environmental factors (for example, wheelchair ramps) make it easier for young adults with disabilities to carry out their daily activities, pain among young adults with disabilities, use of health resources by young adults with disabilities, and obesity among young adults with disabilities. Study results will be posted on this web site as they become available. [Read more about MADDS]

can kids learn about mental retardation?

We have created a series of Kids' Quests designed to get kids to think about people with disabilities and some of the issues related to participation in daily activities, health, and accessibility. The Quests were written for children in 4th through 6th grades, but can be modified by teachers or parents for use with children of other ages and abilities. Each Quest takes kids through a series of steps that encourage them to use the Internet to learn about a disability and the effect it has on a child's life.

One of the Kids' Quests is about children who have a hard time learning new things. This includes children who have mental retardation as well as children who have trouble learning for other reasons. [Go to the "learning limitations" Kids' Quest]

re can I go to learn more about mental retardation?

National Information Center on Children and Youth with Disabilities (NICHCY)
NICHCY provides information on disabilities and disability-related issues for families, teachers, and other professionals. NICHCY has a fact sheet about mental retardation that includes general information on topics such as diagnosis and causes as well as tips for parents and teachers. NICHCY staff will also give information and referrals over the phone (800-695-0285) or by email (nichcy@aed.org).
[In English: General Information about Mental Retardation]
[En Español: El Retraso Mental]

MEDLINEplus: Developmental Disabilities
MEDLINEplus is an online service of the National Library of Medicine. MEDLINEplus is designed to link you to information on specific health topics, including developmental disabilities. Information about mental retardation is included on the Developmental Disabilities page. MEDLINEplus brings together information from many sources and is updated every day. This page includes information on the latest news, general overviews, clinical trials, coping, diagnosis and symptoms, research, specific conditions, law and policy, organizations, children, seniors. Some materials are in Spanish.
[In English: MEDLINEplus Health Information: Developmental Disabilities]
[En Español: MEDLINEplus Información de Salud: Discapacidad de Desarrollo]

advertisement

 

National Center on Birth Defects and Developmental Disabilities (NCBDDD) Publications
NCBDDD staff have written many scientific articles on mental retardation. These articles examine such topics as how common mental retardation is, and factors such as low birth weight or smoking during pregnancy that increase the risk that a child will have mental retardation. You can see a list of these papers (starting in 1990) by using the keyword search on the NCBDDD publications Web page. Choose "mental retardation" in the keyword box on the search page. You can choose whether you want the list to be sorted by author or by date. You can also choose to have the list appear with or without graphics. Click on the Submit button. You will see a list of papers that are about mental retardation. The list will include the complete reference for each paper and a link to an abstract of the paper or to the full text, when available. [Go to NCBDDD publications keyword search page]

© 2003

Related Topics

Mental Retardation
Disabilities
Health

Developmental Disabilities
Health Care
Education