Planning for Stage IV: Child's Age 22 and Beyond
When does planning for the future of our adult children begin? It begins on the day they are born if not before.
When parents are faced with the future of a child with a disability, they pass through uncharted territory, often without a peer group with whom to share experiences and without role models who preceded them to learn from their successes and failures. A child without a disability offers strong indications to their parents either by rejecting their guidance at a certain age in their life, or by showing clear preferences, which offer parents a route by which to assist them in their future direction.
A child with a disability may offer similar cues. However, due to a lifetime of caring for, guiding and advocating, parents are often not used to “listening” to those cues. Parents are accustomed to being involved in a more direct way than they are with their other children. It is no surprise that one of the first steps in planning for the future of a child with a disability starts with the parents own review of their expectations, their readiness to let go, their willingness and ability to listen to their child both directly and indirectly. As a first step in this process, a parent must be ready to face that the future starts now. A parent must define the “now” as to the best time to get serious about the next step for adult planning to begin. The recommendation is that the sooner this process begins the better. Preparation beginning in the early teen years allows a family to do the research and thinking necessary so that when the time comes for the child to leave the school experience, the family is ready to put the plan into action.
The life stages of a child with a disability are more similar than different to those of the child without a disability. The timing may be delayed and the sequence may be a little out of the ordinary, but the stages are similar. It is important to realize that the planning begun at age 16 or 18, will not remain stagnant and be the plan “forever”. What decision do we ever make for ourselves or others at age 18 that applies at age 35 or 50 or 70 or 90. Yet families often feel paralyzed by the enormity of having to make the “perfect” decision which will last a lifetime. When one realizes that a decision can only be made with the information and knowledge available at the time, planning becomes more manageable and less daunting. The child will gather life experiences and skills along the way which will help guide the decisions for the next stages of life.
Families should go through a series of questions and analysis of the answers among all significant members of the family who will play a role in the future of the child. Bear in mind that they will have an opinion and therefore influence the long term success of the residential arrangement as an adult.
Part 2 will continue this discussion.
Source: Dafna Krouk-Gordon, Executive Director, TILL, Inc.