Unfortunately, the following information only applies to the system in the United States. Education-related legislation on behalf of children who have disabilities varies widely throughout the world although Canada, England and many other countries have similar systems to the United States.

United States federal legislation, called the Individuals with Disabilities Education Act (IDEA - 1997), ensures that children with disabilities receive a free, appropriate public education in the lease restrictive environment. The law addresses early identification, assessment, and both the developmental needs of infants and toddlers as well as the educational needs of school age children who are diagnosed with disabilities. Special education services are provided if the disability adversely affects developmental or educational performance. If a person is diagnosed as having CdLS, it is strongly recommended that you make one or more of the following referrals:

Under IDEA, if the child is less than the age of 3, referral can be made to a regional early intervention program (EIP). Early intervention programs not only provide therapies, but also (a) services to promote healthy child development and (b) family support. Many states have a single point of entry into the entire social service system (i.e., area agencies) that help families choose and appropriate EIP as well as apply for other available benefits. If the diagnosis is unsure, the EIP may monitor the childís development.

Under IDEA, if the child is age 3 to 21, the child may be referred for special education services in the town where the family resides by calling the town school department.

If the diagnosis is pending or if the child is mildly affected, what should you do - especially if she/he is not eligible and/or need special education at this time? Under Section 504 (of the Rehabilitation Act of 1973), schools are able to provide some classroom accommodations as well as related services. Thus, a referral to the school may be especially helpful for those children who do not qualify for special education under IDEA or those children whose disability does not adversely affect their educational performance.

If the caretkaer feels that the person with CdLS is not receiving appropriate services or if they would like more information regarding the law and associated regulations as applied to their situation, referrals can be made to the Alliance Coordinating Office: PACER Center (612) 827-2966; 1-888-248-0822.

If a person is age 14 or over and receives special education services, U.S. federal legislation requires the school to develop a statement of transition needs as part of the IEP and to update this statement annually. A component of the statement might be a vocational evaluation and/or a vocational education plan.