PARENT-CHILD SHARED MANAGEMENT

_{Developed by the University of WA Adolescent Health Transition Project, with funding from the WA State Dept of Health, Children with Special Health Care Needs Program Introduction:}

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. Shared Management by parent and child is a model suggested by Dr. Gail Kieckhefer and Cristine Trahms, in which business labels are used to express the changing dynamics in the parent- child relationship as the child/ youth grows and develops. The parent’s role changes over the years from the Provider of care to the Manager to the Supervisor and finally to the Consultant for the youth. The management of the child’s care gradually shifts from parents to child as the child’s skills and responsibility increase even as the parents continue to have a supporting, consultative role.

Shifting Responsibility:

Initially, the youth receives care as a child, then begins to learn aspects of self-care. As the youth grows and develops she/he takes on the roles of Manager, then Supervisor and finally CEO of her/his own care. While the goal of this model is for the young adult to become the CEO of her/ his own care and develop a set of independent self- management skills, parents are still involved in supporting roles of supervising and consulting. Just as the CEO of a company has a board of directors and other executives and employees
to assist, the young adult still interacts with and receives support from family and community, thus the concept of “shared management.”

Key Points:

• Parents guide youth’s forward movement of skills and responsibility. Parents monitor youth’s progress, support efforts and negotiate changes in responsibility.
• Parents and youth both have central roles to play
• Learning is based on the cognitive and physical readiness of the youth

The model above was 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:
   • Parenting skills for typical challenges of growing up
   • Special skills related to the youth’s disorder and its management
   • Aspirations for maintaining family life
   • 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.

How to start taking the next small step towards independence with your child with CdLS:

It is crucial to maximize independence, however, as already stated, that is dependent upon a child’s age and developmental level. With individuals with CdLS, that can be quite variable, so expectations should vary and accomplishments will reflect that. Our goal as parents with all of our children, but especially with our children with disabilities, should be maximizing their independence (autonomy) and self-management.

Steps to Independence- Definitions and general examples

1. Parental Effectiveness, Providing consistent care and limits, emotionally and physically
2. Early Autonomy, Allowing children structured choices about food, dress, and activities within the parameters of what is acceptable to the parent and appropriate to the situation/environment
3. Promotion of developmental potential, Being aware of where your child is in his/her
   development and encouraging and stretching them to the next developmental level
4. Prevention of secondary disability and dysfunction, Foster and teach positive coping strategies when child is upset, unsure or anxious, and provide reasonable and enforceable consequences when maladaptive behaviors occur as well as teaching and practicing the steps to be successful as youth moves to independence
5. Good health habits, Foster and teach good nutritional habits, emotional habits, and physical habits
6. Self-Responsibility, Youth takes more responsibility for own behavior and decisions. Parent serves as supervisor and consultant
7. Self-Efficacy and Mastery, Youth’s confidence in their own ability to achieve in specific situations or accomplish tasks
8. Self-Esteem, Youth feels confident and competent
9. Sense of Identity, The qualities, beliefs, personality, looks and/or expressions that make a person (self-identity) unique and worthwhile. Parent reinforces and values the youth as an individual and values the choices they have made independently.

Gail M Kieckhefer, PhD, PNP, ARNP, Family & Child Nursing and MCHB Pediatric Pulmonary Center, University of Washington

This handout from the above presentation was developed with permission by Katherine TeKolste, MD and Sue Livingstone, MD, Adolescent Health Transition Project, Center on Human Development and Disability, University of Washington, June 2010.

Source:

“Keeping the AFOs on: A Developmental Approach to Engaging Children and Families in Shared Management” a presentation at the 2010 Duncan Seminar, published on 16 Mar 2010

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Last modified by Gerritjan Koekkoek on 2022/07/11 16:20

Created by Gerritjan Koekkoek on 2022/05/02 17:55