PATH TO INDEPENDENCE SUMMARY

_{Based on article “PARENT-CHILD SHARED MANAGEMENT PATH TO INDEPENDENCE” by, Mary Levis, N.C.S.P., Mother to Joshua and Member of the CdLS Professional Development}

Children with developmental disabilities, chronic illness or other disabilities may be delayed or limited in reaching this independence in daily self-management due to medical problems, physical restrictions or cognitive limitations. Sometimes parents are hesitant or uncertain about how to encourage independence in children who have special needs.

The full article, which can be found here, discusses in depth the Shared Management Model suggested by Dr. Gail Kieckhefer and Christine Trahms. This model uses business labels to express the changing dynamics in the parent-child relationships as the child grows and develops. The parent’s role changes over the years from the Provider of Care to the Manager to the Supervisor and finally the Consultant for the Youth. The article outlines the model in a variety of independence levels. It was initially developed for youth with typically developing cognitive skills, but the approach can be modified with smaller steps and a final outcome anywhere along the continuum, still aiming for maximal self-management and independence.

In regard to Shared Management and working towards independence,

YOUTH AND PARENTS SHOULD REMEMBER

1. It is never too early and never too late to begin
2. No youth is too limited to participate - but age and developmental level both need to be considered
3. Shared management supports movement up the stairway to maximal independence, taking the next small step, but allows for temporary regression
4. Shared management requires of parents:
   1.* Parenting skills for typical challenges of growing up
   1.* Special skills related to the youth’s disorder and its management
   1.* Aspirations for maintaining family life
   1.* Dedication to support current and future overall health outcomes

HOW TO START TAKING THE NEXT SMALL STEP TOWARDS INDEPENDENCE

1. Identify areas in which progress needs to be made. Look at recent IEPs, consult your child’s doctors and therapists. Consider youth and family needs, concerns and goals.
2. Select a few specific goals to work toward, which are important to the youth and parents.
3. Break these goals into small steps considering current skills and limitations and the tasks to be learned. Teachers and therapists may be helpful in doing this.
4. Prepare a plan to learn/teach/model these skills with the youth taking as much responsibility as possible. Parents may act as consultant, supervisor, or manager.
5. Review/re-evaluate periodically.

_{Full article and visual representations of the modified approaches can be found in the appendix.}