Considerations for Parents of Children with Developmental Disabilities.

            Parents with a child who has developmental disabilities face different challenges during the life of their disabled child.  These can be grouped into four different stages based on age.  Let us consider what is important at each stage.

            Stage 1, from birth till age 3, involves the “Individual Family Services Plan” (“IFSP”).  The IFSP is developed with a service coordinator in order to identify individualized supports and services that enhance the child’s development.  The IFSP is about creating opportunities for learning interventions in everyday family routines and typical family activities.  (Wikipedia – Individual Family Services Plan.)

            Stage 2, between ages 3 and 15, involves the Individualized Education Plan (“IEP”).  School districts are required to offer the child “free appropriate public education.”  After the child’s needs and abilities are assessed, an IEP is developed to assist the child’s unique needs to meet educational objectives.  The IEP takes the collaboration of the disabled student, the student’s parent(s) or guardian(s), a special education teacher, case manager, at least one regular education teacher, a representative of the school or district who is knowledgeable about the availability of school resources, and an individual who can interpret the instructional implications of the child’s evaluation results (such as the school psychologist).  (Wikipedia – Individualized Education Plan.)

            Stage 3, from age 16 to 21, involves the transition to high school and college.  This is a very critical stage because this is when the child attains majority at 18.  Let’s consider what age 18 means.

            First, for a disabled child to receive the generous support of the local Regional Center client, the child must be diagnosed as developmentally disabled prior to turning 18.  If diagnosed as developmentally disabled, the child qualifies for Regional Center programs that provide substantial lifetime assistance.  It is very important, therefore, for the parents of children who may qualify as developmentally disabled to apply timely to their local Regional Center for a determination of eligibility. 

            Second, the parents must consider whether a limited or general conservatorship is needed to oversee issues relating to the child’s estate (income, assets, and legal matters) and the child’s person (health and welfare issues).  Once the child turns 18, the parents no longer have the control over these issues as they did when the child was a minor.  That reality is sometimes overlooked due to ignorance of the law.

            Third, at age 18, a disabled child is also likely to become eligible for SSI/Medi-Cal because the parents’ resources are no longer deemed as the child’s resources for eligibility purposes — as they are prior to age 18.  Moreover, a special needs trust may now become necessary in order to prevent any non exempt assets received by the child as gifts or inheritances from being counted as available non exempt assets subject to the $2,000 non exempt asset limitation. 

            Fourth, at age 18, a disabled child will no longer be allowed to live at a home for minors with disabilities.  They will now move to a supervised adult home for the care of persons with disabilities. 

            Stage 4, at age 22 onwards, involves the transition to adult living.  Special education entitlement ceases at age 22.  Now, the disabled child must seek residential, vocational, and transportation services.  If the child is a developmentally disabled client of a Regional Center, the child will be assisted in these regards.  Clearly, it is important for families to get their child diagnosed as developmentally disabled and apply for enrollment at a regional center prior to age 18.  An oversight in diagnosing developmental disability prior to age 18 cannot be rectified with a determination after age 18.

            Clearly parents must look down the road and plan ahead.  Not planning can result in missed opportunities and hardships.  Planning, however, can allow smoother transitions at each stage.