बच्चे / For Kids

The interests of kids with disabilities are at the heart of numerous policies and programs set forth by nonprofit groups, resource centers and state and federal agencies. There are programs to ensure families have resources to live. There are programs that hope to make healthcare available. Laws have been written to guarantee that all kids, no matter what disabilities come into play, get a free public education.

Of course, having such policies and applying them across the land means that parents must navigate through a maze of regulation in areas of social security, healthcare, special education and even tax law.  The most important tools for parents are other parents. There is no substitute for the advice and counsel of those who have been in similar situations. 

Here is a rundown of several key programs for kids (from birth to age 18) with disabilities, including numerous links to connect with other parents of kids with disabilities.

IDEA
The Individuals with Disabilities Education Act (IDEA) is a law created to ensure that all children with disabilities, regardless of the severity of their disability, have available a “free appropriate public education,” including special education and related services.  IDEA makes funds available for states and cities to assist in the education of infants, toddlers, preschoolers, children and youth with disabilities. In order to remain eligible for federal funds, states must ensure that children with disabilities receive a complete individual evaluation and assessment of their specific needs.

An Individualized Education Program (IEP) or an Individualized Family Services Plan (IFSP) will be drawn up for every child or youth found eligible for special education or early intervention services. An IEP is the contract between the school district and the student that lists the type and amount of services it will provide to the student. To the maximum extent appropriate, all children with disabilities are to be educated in the regular education environment.  

Those receiving special education have the right to receive the related services, which may include transportation; speech pathology and audiology; psychological services; physical and occupational therapy; recreation, including therapeutic recreation; rehabilitation counseling; and medical services for diagnostic or evaluation purposes. Parents have the right to participate in all decisions related to identification, evaluation and placement of their child with a disability. Parents may appeal any decision concerning the education of their child. IDEA was reauthorized by Congress in 2004.

Among the changes in the law are provisions that all public elementary and secondary special education teachers be “highly qualified” as special education teachers, and new rules for children in private schools.

Early Intervention
Children from birth through age two may be eligible for no-cost services through The Infants and Toddlers with Disabilities Program (Part C) of IDEA. Programs for children under age three are provided by different agencies in different states: the department of education will handle some programs, or the health department or another agency may be the lead agency -- it varies from state to state.

Early intervention services must be provided by qualified people who work with infants and toddlers who have disabilities or who are at risk of developing disabilities. Services must be written into an Individualized Family Services Plan (IFSP) that is reviewed every six months.  Contact NICHCYfor information by state about how to access services for infants and toddlers.

State Children’s Health Insurance Program (SCHIP) 
This program is administered by the state, which sets eligibility and coverage according to broad federal guidelines. Requirements include the following: low income; ineligibility for Medicaid; must be uninsured.

Programs offer inpatient and outpatient hospital services; doctors’ surgical and medical services, including lab and X-ray; well-baby/child checkups and immunizations. Apply for SCHIP at public schools. In some states, one can apply through public health departments, state social service agencies, or state welfare agencies. Call 1–877–543–7669.
Contact the SCHIP office of the U.S. Department of Health and Human Services 

Children With Special Health Care Needs (CSHCN)
Children who are eligible for Supplemental Security Income (SSI) are also eligible for CSHCN, a federal program administered via state health agencies. Most CSHCN programs help provide specialized services through arrangements with clinics, private physicians, hospital-based outpatient and inpatient treatment centers, and social services. CSHCN programs are known by a variety of names, including Children’s Special Health Services, Children’s Medical Services, and Handicapped Children’s Program. A CSHCN program may be able to help even if a child is not eligible for SSI. The Institute for Child Health Policy at the University of Florida publishes a directory of state CSHCN programs. Institute for Child Health Policy, 5700 S.W. 34th Street Suite 323, Gainesville, FL 32608; telephone toll-free 1–888–433–1851. Visit their site and click on the directory link

Special-Needs Trust
In traditional estate planning, wills and trusts generally specify what is to be paid to whom and when. Planning for people with disabilities is quite different; standard wills and trusts can leave beneficiaries liable to the government and other creditors. Parents (or other family members) of a disabled child can get around this liability issue by establishing what is called a special-needs trust. This planning tool places the disabled child’s share of the estate into a special trust without threat that receipt of these funds will disqualify them from essential public benefits, including healthcare.

Typically, when a special-needs trust is established by parents, the parents serve as the trustee until they die or become incapacitated. When that occurs a successor, or trustee, selected in advance by the parents, continues to serve according to instructions contained in the trust. The disabled person has no power or authority to direct the payment of funds; that power is turned over to the trustee, who pays for items and services beyond the bare necessities the government provides.

When setting up a special-needs trust it’s a good idea to work with an expert lawyer. This is a complicated area of the law; government agencies have imposed very stringent rules and regulations upon these types of trusts. Look for an attorney who specializes in probate law, trusts and wills and estate planning. Connect with other parents or disability organizations, or contact the bar association in your area for referrals. 

Sources
National Information Clearinghouse for Children and Youth with Disabilities (NICHCY); Office of Special Education Programs (OSEP); Parent Advocacy Coalition for Educational Rights (PACER) 

Resources
Alliance for Parent Centersprovides training and information to parents of infants, toddlers, school-aged children and young adults with disabilities, as well as the professionals who work with the families. For the regional parent center in your area, contact the Technical Assistance Alliance for Parent Centers Coordinating Office, PACER Center, 8161 Normandale Boulevard, Minneapolis, MN 55437; toll-free 1–888–248–0822; or visit  

 The Arcis an organization of people with mental retardation and related developmental disabilities, parents and other family members, and professionals who work with them. The Arc of the United States, 1010 Wayne Avenue Suite 650, Silver Spring, MD 20910; telephone 301–565–3842.

 Council for Exceptional Children (CEC)is a professional organization dedicated to improving educational outcomes for students with disabilities and/or other special exceptions. CEC advocates for appropriate governmental policies, sets professional standards, provides professional development, and advocates for underserved individuals. Council for Exceptional Children, 1110 North Glebe Road Suite 300, Arlington, VA 22201; toll-free 1-800-224-6830.

Easter Seals has been helping individuals with disabilities and special needs and their families live better lives for more than 80 yearsPrimary Easter Seals services include rehabilitation, physical therapy, occupational therapy, speech and hearing therapy, job training, employment, child care, adult day services and much more. Easter Seals has dozens of local offices. Contact the national office for details. Easter Seals, 230 West Monroe Street Suite 1800, Chicago, IL 60606; toll-free 1–800–221–6827.  

 Educational Resources Information Center (ERIC)is an internet-based digital library of education research and information sponsored by the Institute of Education Sciences (IES) of the U.S. Department of Education. ERIC gathers and disseminates professional literature, information and resources on the education and development of individuals of all ages who have disabilities and/or who are gifted. ERIC EC, toll-free 1–800-538-3742. 

Family Center on Technology and Disabilitysupports assistive technology organizations and programs that work with families of children and youth with disabilities. The website features a searchable database containing reviews of books, articles, research and other materials. Publishes a monthly newsletter. Family Center on Technology and Disability, 1825 Connecticut Avenue, N.W. Seventh Floor, Washington, D.C. 20009; telephone 202–884–8068.

Family Voicesis a national, grass roots clearinghouse for information concerning the healthcare of children with special health needs. Family Voices, 2340 Alamo SE, Suite 102, Albuquerque, NM 87106; toll-free 1–888–835–5669. 

 Fathers Networkis a national information resource to assist fathers involved in the lives of children with special needs. A program of the Kindering Center, funded by the Office of Children with Special Health Care Needs, Washington State Department of Health. Washington State Fathers Network, 16120 N.E. 8th Street, Bellevue, WA 98008; telephone 425–747–4004.

 Federal Resource Center for Special Education (FRC)supports a nationwide technical assistance network to respond to the needs of students with disabilities, especially those from underrepresented populations. Federal Resource Center for Special Education, c/o Academy for Educational Development, 1825 Connecticut Avenue N.W., Washington, D.C. 20009; telephone 202–884–8215.

 IDEA Partnershipis a collaboration of more than 55 national organizations, technical assistance providers, state and local organizations and agencies working to improve educational results for children and youth with disabilities. The single partnership replaces four previous partnerships and is supported by the Research to Practice Division of the Office of Special Education Programs in the U.S. Department of Education. Contact the Partnership by way of the National Association ­of State Directors of Special Education (NASDSE), 1800 Diagonal Road, Suite 320, Alexandria, VA 22314. Toll-free call 1-877-IDEA.info.

 National Early Childhood Technical Assistance Center (NECTAC)supports the implementation of the early childhood provisions of the Individuals with Disabilities Education Act (IDEA). The center offers many resources and state phone contacts, hoping to strengthen service systems so children with disabilities (birth through five) and their families benefit from high-quality support and services. National Early Childhood Technical Assistance Center, Campus Box 8040, University of North Carolina, Chapel Hill, NC 27599; telephone 919–962–2001.

 National Information Clearinghouse for Children and Youth with Disabilities (NICHCY)is a resource for families and professionals with information about disabilities and related services. NICHCY offers details on education rights and the laws that enforce them. The clearinghouse also maintains a directory of disability related services and programs by state; to tap into the essential resources for your area contact NICHCY, P.O. Box 1492, Washington, DC 20013; toll-free 1–800–695–0285.  For more on early intervention, click on “Publications,” then on “Parent Guides.” NICHCY also offers training and curriculum modules on IDEA.  

 National Organization for Rare Disorders (NORD)is a federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD maintains three searchable databases and an alphabetical index of over 1,000 diseases. National Organization for Rare Disorders, 55 Kenosia Avenue, Danbury, CT 06813; toll-free 1–800–999–6673. 

 Office of Special Education Programs (OSEP)is part of the Office of Special Education and Rehabilitative Services in the U.S. Department of Education. OSEP’s role is to improve results for infants, toddlers, children and youth with disabilities by providing leadership and financial support to assist states and local districts. OSEP administers the Individuals with Disabilities Education Act (IDEA), which authorizes grants to states, institutions of higher education and other nonprofit organizations to support research, technical assistance, technology development and parent-training and information centers. Office of Special Education Programs, U.S. Department of Education, 400 Maryland Avenue, S.W., Washington, D.C. 20202; telephone 202–401-2000. 

 Parent Advocacy Coalition for Educational Rights (PACER)was created in 1977 by parents of children and youth with disabilities to help other parents and families facing similar challenges and opportunities. PACER addresses special needs for all stages of childhood and all disabilities, and identifies resources and services available to help families learn and grow. PACER is also the coordinating office for Families and Advocates Partnership for Education (FAPE) to reach parents, administrators, service providers and policymakers with information about implementing IDEA. PACER Center, 8161 Normandale Boulevard, Minneapolis, MN 55437; telephone 952–838–9000. 

 Parents Helping Parents (PHP)was formed to make sure children of all ages and backgrounds receive the resources, healthcare, education, and other services they need to reach their full potential. PHP offers information, training and support to families, professionals and the communities in which they live. Parents Helping Parents, 3041 Olcott Street, Santa Clara, CA 95054; telephone 408–727–5775. 

 Shriners Hospitals: The Shrine of North Americahas established 22 pediatric hospitals in the United States, Canada and Mexico for kids with neuromusculoskeletal conditions, burn injuries and certain other special health care needs; there is no charge for any services. Three specialized rehabilitation units have been established for young people (up to age 18) with spinal cord injuries. The SCI facilities are located in Philadelphia, Chicago and Sacramento. For more information contact Shriners International Headquarters, 2900 Rocky Point Drive, Tampa, FL 33607; telephone toll-free 1–800–237–5055.

Sibling Support Project, part of the Arc of the United Statesis a peer support program dedicated to the interests of brothers and sisters of people with special health and developmental needs. The Sibling Support Project, 6512 23rd Avenue, N.W. Suite 213, Seattle, WA 98117; telephone 206–297–6368; or visit the Internet site http://www.thearc.org/siblingsupport  Special Needs Advocate for Parents (SNAP) features national online and print information for parents of children with disabilities. SNAP offers advocacy and resolution of medical insurance problems, referrals to educational advocates, support groups, and related organizations and professionals. Special Needs Advocate for Parents, 11835 W. Olympic Blvd. #465, Los Angeles, CA 90064.

 Through the Looking Glass/National Parent-to-Parent Networkconnects parents with disabilities and others who may have shared similar experiences or faced common barriers related to child custody, adoption, pregnancy and birthing, specialized baby care equipment, etc. Through the Looking Glass, 2198 Sixth Street Suite 100, Berkeley, CA 94710-2204; toll-free 1–800–644–2666.

United Cerebral Palsy (UCP)a partner with the Paralysis Resource Center, is a national organization with 110 affiliates in almost every  state that strives to include persons with disabilities into every facet of society.  UCP is the leading source of information on cerebral palsy, although 65 percent of the people served by UCP have disabilities other than CP. UCP National, 1660 L Street, N.W. Suite 700, Washington, D.C. 20036; telephone toll-free 1–800–872–5827.

 University Of Montana Rural Institute: Center for Excellence in Disability Education, Research, and Serviceis part of the national network of programs funded by the Federal Administration on Developmental Disabilities (ADD). The program is committed to the independence, productivity and inclusion into the community of persons with disabilities. The University of Montana Rural Institute, 52 Corbin Hall, Missoula, MT 59812; toll-free 1–800–732–0323.

 Winners On Wheels (WOW)is a national organization for children who use wheelchairs, featuring a social/recreation program that assists children in developing positive self-esteem and promoting independence and fun. WOW believes that encouraging personal achievement through creative learning and fun develops an individual's self-esteem. Winners On Wheels, 302 E. Church Street, Lewisville, TX 75057; toll-free 1–800–WOWTALK.

Exceptional Parentis a media company that offers information to families and professionals involved in the care and development of people with disabilities and special healthcare needs. Publishers of Exceptional Parent magazine. Exceptional Parent, 551 Main Street, Johnstown, NJ 15901; call toll-free 1-800-372-7368.

Kids on Wheels is a unique book, and now also a magazinewritten in two parts: one for parents; one for kids living with disabilities. The idea, says founding editor Jean Dobbs, is to respect and empower young people, “to plant the seeds of independent living, disability pride and ‘the dignity of risk.’” The book is a full reference guide to pediatric physical medicine, community living, education, benefits, active living, etc. The quarterly magazine carries the theme forward with news, features and personality. From Leonard Media, which publishes New Mobilty. P.O. Box 220, Horsham, PA 19044, toll-free call 888-850-0344.

Ability OnLine is a computer friendship network for children and youth with disabilitiesthat helps them connect to one another and to friends and family members. The site also provides a place for parents, caregivers and healthcare professionals to discuss issues of interest. The Toronto-based online connection promotes inclusion and full community participation. Traffic is monitored; access is free, registration required.

 All Kids Can! is an online disabilities awareness program that helps students of all ageslearn attitudes of acceptance, dignity and respect toward all people, especially those with disabilities. See http://www.allkidscan.com  Band-Aides and Blackboards is a Web community that sensitizes people to the reality of growing up with a medical problem. Many kids with diseases or conditions keep them secret, avoiding the stigma attached to not being physically perfect. This site, with sections for kids, teens and adults, makes the case that we’re all more alike than different.  

U Can Do!is an Internet community that celebrates the differences and abilities of all people, helps young people develop a positive attitude and broader perspective about themselves, and fosters a “can do” attitude to expand the possibilities for us all. The site features activities, dream sharing, etc. On the Internet see http://www.ucando.org  DO-IT (Disabilities, Opportunities, Internetworking, and Technology) aims to increase participation of people with disabilities in challenging academic programs and careers and to promote the use of information technology to maximize independence and productivity. DO-IT offers a mentor and pen-pal system for support and shared experience. Funding for the program is provided by the National Science Foundation, the State of Washington, and the U.S. Department of Education. DO-IT, University of Washington, Box 355670, Seattle, WA 98195; telephone 206–685–3648.

The Child Advocate website features his webpage entitled Section 504 and IDEAEDLAW: Attorney S. James Rosenfeld, founding managing editor of Education for the Handicapped Law Report, created this  legal resource to address issues related to law and education. 

 Education on Disability and Gender Equity (EDGE)is a Website curriculum project that offers readings, activities, resources and analysis so high school students can gain a better understanding of disability and gender and their impact on society. 

 Keep S’myelin is a colorful online magazineto help kids better understand multiple sclerosis, from the National Multiple Sclerosis Society. http://www.nmss.org, search Keep S’myelin 

Zigawhat is a Web information hub mainly for kidsmaintained by the folks at the National Dissemination Center for Children with Disabilities (NICHCY). Kids a can share their story, connect with others, learn about their own health issues, play games and have fun.