“Transition” is the word we will use for the changes, planned and unplanned, that the person with CdLS and their family will go through in a lifetime.

Sometimes they are true transitions – a process or a period of change – and sometimes (even despite our best efforts) they can be abrupt. While we can never control the future or plan for every possibility, the better informed we are as to what to expect, the better equipped we are to take appropriate and timely action to make these transitions as smooth as possible.

Some of the most important changes are based on current laws, that cover the right to educational services from birth through the time the individual “ages out.” Transitions occur with the move from early intervention, pre-school, school and then to adult life.

Other important law-based changes occur when the individual reaches the age of majority. At this time, a guardianship may be necessary for family members to have a voice in decisions involving basic matters, medical care or where the individual will reside. There may be issues of continuing coverage under parents’ medical plans.

Various government benefits, like Medicaid or Social Security Insurance (SSI), may become available at this time and adult services may be available. Other changes are based on circumstances that are hard to anticipate. The needs of the individual may change, and a program that seemed ideal may no longer be appropriate. A family may move from one area to another.

Government funding for a service or program may disappear, or ones become available. And, what may be most difficult, the primary caregiver(s) may no longer able to fulfill that role.


The principal federal law concerning special education services is the Individuals with Disabilities Education Act (IDEA). Part C of IDEA is about services from birth through age two and Part B runs from age three through the date the individual “ages out” of their local school system. In addition to the federal law, there are also local laws.

The federal law sometimes gives the states choices as to the educational programs and services they offer. It is important for parents to find out exactly what is required to provide, and to plan, early on, for the changes in programs or services that will likely occur with every transition that happens.

This includes applying as soon as possible to future programs and getting on the waiting lists. The transition from the educational system to the adult world is, in many ways, the most difficult because while there is a right to a free appropriate public education and procedural safeguards guaranteeing that right, there is no similar right to adult services. Even prior to government funding cutbacks in social services, lack of needed services for adults with disabilities and long waiting lists were common. The situation is not improving, nor likely to improve in the foreseeable future. While a child is still in the educational system, there is an important requirement under the IDEA that relates to transition: starting no later than the IEP for the school year in which the child turns 16 (or 14 in some states) and each year thereafter, the IEP must contain a written transition plan (individual states may have different age requirements. Local school districts may take this requirement with varying degrees of seriousness. For some school districts, this is just a few boxes to check on a form, while for others there may be meaningful meetings where the representatives of the school district, local adult services agency, family and student, if they are capable of participation, can truly plan for the future. This incorporates including in the student’s current IEP the services they will need to prepare them for adult life. Parents should know their rights, and try to get the transition planning that the student needs and is entitled to. If the local school district does not provide meaningful transition planning, parents can attempt to address that lack through a due process hearing (your right under the IDEA – consult the statement of rights that the school district is required to give parents each year.)

Parents should make direct contact with the state agency responsible for developmentally disabled people and seek their help. At the earliest possible time, getting on any necessary waiting lists for adult services – given the length of the waiting lists. Parents should also consider contacting local advocacy groups, who may be able to provide advice or legal counsel. The experiences of other families who have already gone through this may also be a great resource.


The services offered to adults with developmental delays differ in every state. The key is to identify knowledgeable sources of information and help in your area, and, if possible, do so well before you actually need services. If there is a move from one area to another – particularly from one state to another – there will likely be bureaucratic obstacles and delays before services become available.

The person with CdLS may require different programs and services at various times in their adult life, depending on their needs. Advanced planning is essential so that an acceptable situation is available in the event that a caregiver becomes unavailable. Issues of guardianship should be addressed before the individual reaches the age of majority.

In some states, it is possible to apply and be confirmed as a legal guardian even prior to the time the individual with CdLS attains the age of majority, and it may be prudent to do so to avoid last-minute delays in the guardianship appointment process.

Without guardianship, family members may have no legal standing to be involved in decisions with respect to such basic issues as medical care or where the person with CdLS will live. Services for adults vary. The following are some examples:

Day programs: 
These include supported employment, workshop settings, adult daycare and vocational training.
Residential programs
for individuals with developmental delays who do not live with their families: These may be supported apartments (where one or more individuals live with only minimal support from professionals like social workers who visit occasionally), group homes (typically with 24/7 staffing), developmental centers and other institutional settings.
In-home services
for individuals with develop- mental delays who live with their families: These include an aide coming to the home for a given number of hours per week) and/or periodic respite care to allow the family caregiver some time for themselves.
Other issues that should be addressed before the individual becomes an adult include:

  • Entitlement to government benefits
  • Medical coverage
  • Supplemental needs trusts

If the person with CdLS has never been assessed to see if they have autism, pervasive developmental disability or some other Autism Spectrum Disorder, testing should be done. While there are specialized programs for people on the autism spectrum, which may be appropriate for someone with CdLS, unless the person with CdLS also has an autism spectrum diagnosis, they may be denied admission.

Medical and Behavioral

With proper behavior management and instruction techniques, individuals with CdLS can be educated academically, vocationally and have meaningful lives as adults in environments supportive of their unique needs.

For individuals with CdLS who have behavioral challenges, programs based on Applied Behavior Analysis (ABA) are most likely to succeed. If necessary, a behavior plan should be developed based on a functional analysis of the problem behaviors. It is important to define the function of the problem behavior.

Treatment procedures should include a structured daily schedule, using direct instructions, differential reinforcement of appropriate behavior, reinforcement of desired positive behavior with highly motivated reinforcers for the individual and the offering of choices whenever possible. Such ABA techniques are applicable to adults as well as children with CdLS. People with CdLS frequently suffer from increasing anxiety in adolescence and early adulthood, particularly at times of transition or a major life event, like the loss of a loved one. This anxiety requires effective management, whether psychologically, behaviorally, pharmacologically or through a combination of approaches.

Individuals with CdLS are often shy and have significant deficits in social skills. They can be helped by explicit instruction in social skills in various MEDICAL settings, as well as by speech therapy aimed at remediating expressive language deficits. Those who are mildly affected may benefit from socializing with individuals who are similarly affected (informal support groups, participation in social media networking sites, etc.).

If verbal language is limited, many people with CdLS benefit from some type of augmentative communication, such as an object or picture exchange or a communication display device.

Transitions are frequently difficult for people with CdLS, and they require careful preparation (consider doing this pictorially as well as orally where appropriate). Use of a task analysis or breaking down an activity into sequential steps is beneficial. Individuals with CdLS may benefit from visual picture schedules, e.g., showing what is happening next and removing pictures when a task or activity is finished. Given the wide diversity of people with CdLS cognitively, behaviorally and medically, it is difficult to generalize about the kinds of employment opportunities or adult programs that are appropriate. However, many individuals with CdLS are capable of meaningful gainful employment and/or volunteer work, and the lives of all—no matter how severely affected— can and should include appropriate daytime activities. 

The ability of individuals with CdLS to learn and grow does not end when they age out of public education.


Access as adults to pre-vocational and vocational training programs, including on-the-job training for those able to participate or adult programs in the community, is important to enable lifelong learning and personal fulfillment to the maximum extent possible.

The most desirable characteristics of any setting—whether educational, residential or vocational—is for it to be nurturing, caring, secure, safe, responsive, friendly and stimulating, with clear, consistent behavioral expectations. The environment should be organized, have structure, routines and schedules built into the day, with choice being a regular part of the day.

"Treatment procedures should include a structured daily schedule, using direct instructions, differential reinforcement of appropriate behavior, reinforcement of desired positive behavior with highly motivated reinforcers for the individual and the offering of choices whenever possible.”

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