1.2 TRANSITIONS INTO THE WORLD OF ADULT SERVICES

TRANSITIONS INTO THE WORLD OF ADULT SERVICES

The services offered to adults with developmental delays differ from state to state and locality to locality. The key is to identify knowledgeable sources of information and help in your area, and, if possible, to do so well before you actually need services. With moves 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 as well as the ability of their families or guardians to meet those needs. Advanced planning is essential so that an acceptable situation is available in the event that a caregiver becomes unavailable. Issues of guardianship (including desig- nation of backup guardians, in the event the current guardian cannot fulfill that function) should be addressed before the individual reaches the age of majority in your state. In some states, it is possible to apply and be confirmed as a legal guardian even prior to the time the person with a disability attains the age of majority, and it may be prudent to do so to avoid last-minute delays in the guard- ianship appointment process. Without guardianship (or a durable power of attorney or a medical decision-making proxy, if the person with CdLS has the capacity to knowingly execute such documents), family members may have no legal standing to have involvement 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 devel- opmental 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 institu- tional 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 (including Social Security benefits like
  • Supplemental Security Income – which is based upon the individ- ual’s disability 
  •  or Social Security benefits available to disabled dependents or survivors of Social Security recipients); 
• medical cover- age (Medicaid, Medicare, private insurance); 
• and supplemental needs trusts (to preserve eligibility for government benefits where there are limits on the assets or income that the individual is allowed to have).

f 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 special- ized 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, he/she may be denied admission.