Parent-Professional Partnerships for Children with Disability

Over the past several years, I have attended many meetings with parents and professionals – both for my own child with a disability and as an advocate for others. At these meetings, I have seen the best, where parent /professional relationships are fantastic, and the worst, when collaboration efforts are a nightmare!

Sometimes the parent contributes to this failure, sometimes the professional is inappropriate, and sometimes both parties are to blame for a dysfunctional partnership. I have witnessed the parent from hell. I have encountered the professional who pursued the wrong career.

Why Disability Partnerships Don’t Always Succeed

Many factors can prevent a strong parent/professional partnership from developing. Most every parent I know has some sort of outrageous “horror story” concerning a professional who said or did something truly unkind or totally unprofessional. Parents may forever lug around this burdensome baggage and it may prevent them from starting anew.

Professionals can be very protective of their “turf.” After all, professionals went to college or received some type of extensive training to do their job, then along comes a parent to contradict them or request a new and sometimes controversial treatment or method. Their thought might be “hey, they are JUST a parent!”

Parents often find it easier to talk with our staff, who are all parents of children with disabilities, than to discuss issues with professionals.

  • When encountering professionals, some parents become intimidated and fail to speak up for issues discussed with our staff.
  • Some parents become defensive and aggressive – not at all the mild-mannered individual we may have coached in our office.

We try to encourage parents to express themselves to professionals in the same sincere and thoughtful way they talk with us in private.

There are times, however, when we recognize that professionals are not listening to families, that family rights are being abused and that the parents we represent need to take a firm stand. Not all professionals value parents as credible members of the team assisting a child with a disability.

On the other hand, some parents are truly out of control. There are individuals whose anger runs deep and they need help to unravel the feelings that prevent them from establishing a meaningful relationship with care providers.

Evolving Partnerships and Programs

Most parent/professional relationships go through an evolution. It takes time to establish a rapport with team members. Parent/professional relationships can result in most powerful and creative teams. These teams are strengthened by the collective expertise of the group.

I’ve witnessed an abundance of these progressive teams in the Infant Learning Program, where parent involvement is a major key to success. The Individual Family Service Plan (IFSP) requires and values the input of the families. Professionals visit families in their homes and respect parent priorities and culture.

Individual Education Program (IEP) teams are another area where parents and professionals have a mandate to work together.

Staff Turnover can be a Problem

One factor that influences IEP teams is the turnover of team members from year to year. As a child moves through a school from grade to grade, main “players” may change each year.

Each time a member is added or dropped from the team, the team goes through changes, and team members must adapt to those changes. A rapport must be established again and again. Parents often express frustration with this continued transition.

What Do Families Think About Family/Professional Collaboration?

Editor’s Note: Although this article is prefaced to parents of children with emotional disorders, I felt it had universal appeal to all families of children with disabilities.

Parents of children with emotional disorders have often felt excluded by the professionals providing care and treatment for their children. For example, many family members report little involvement in their child’s educational plan or not being informed about their child’s psychiatric treatment. In recent years, parents and some professionals have called for partnership or collaboration between family members and professionals.

Many authors, both parents and professionals, have suggested what professionals need to do to collaborate with families, but there has been no research asking families what they think. In conjunction with the study to examine some of the ways in which parents express empowerment, the Research and Training Center on Family Support and Children’s Mental Health staff also asked parents to rate their relationship with a professional with whom they had worked over the past year. Parents’ responses revealed that from their perspective there are four distinct parts of elements to collaboration.

  1. It is important that professionals be supportive and understanding in their relationships with family members that is, include parents in decision making about the child and understand that families have many obligations in addition to caring for their child with a disorder.
  2. Professionals should assist families in the practical aspects of getting services for a child, that is, assist families in finding, coordinating and paying for services when needed.
  3. Open and honest communication was identified as an important element of family/professional collaboration.
  4. Professionals must be willing to involve families in judging how well services are working an be willing to change services bases on parental feedback.

In addition to these findings, the study also noted characteristics of professionals and their organizations that are associated with parent/professional collaboration. The complete paper describing this study is entitled “From Paternalism to Partnership: Family/Professional Collaboration in Children’s Mental Health.”

Seven Principles of Family/Professional Collaboration

In the book Family/Professional Collaboration for Children with Special Health Needs and Their Families, published by the Department of Social Work at the University of Vermont, the authors outline seven valuable principals for families and professionals working together. The seven principals are quoted verbatim below from page 15 of the book.

Family/professional collaboration:

1. Promotes a relationship in which family members and professionals work together to ensure the best services for the child and the family;
2. Recognizes and respects the knowledge, skills and experience that families and professionals bring to the relationship;
3. Acknowledges that the development of trust is an integral part of a collaborative relationship;
4. Facilitates open communication so that families and professionals feel free to express themselves;
5. Creates an atmosphere in which the cultural traditions, values, and diversity of families are acknowledged and honored;
6. Recognizes that negotiation is essential in a collaborative relationship; and
7. Brings to the relationship the mutual commitment of families, professionals, and communities to meet the needs of children with special health needs and their families.

Family/Professional Collaboration for Children with Special Health Needs and Their Families, University of Vermont

Success Formula: Respect and Communication Skills

I believe that ATTITUDE is the major factor in a successful parent/professional relationship. For a truly productive and progressive partnership, each party must respect the other members of their team; respect for expertise, respect for individual priorities, respect for culture and lifestyle.

Besides attitude, other factors greatly influence the parent/professional relationship, including some very basic skills required by both parties. Communication and negotiation skills top this list. Both parties need to know the difference between assertiveness and aggression. Both parties need to know how to compromise – to be flexible. And of course, everyone needs to know how to listen.

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