April 1995

The Dream Team: Life as an Adventure with Families Using Assistive Technology

It is a common belief that families and professionals must work together as a team to insure that children with disabilities use assistive technology meaningfully in their daily routines. However, this belief is difficult to translate into real life situations. Families AND professionals are often frustrated with the outcomes of planning -- families don't feel their needs are adequately addressed, professionals feel families expect too much or are "unrealistic" and, most importantly, children are not afforded meaningful opportunities for active involvement.

Building a team is not an easy process but it is imperative to successful assistive technology service delivery. Each person -- whether family member or professional -- brings their own perspective to the process. Unless there is a framework or format to cooperatively share, respect and value these perspectives a true team process does not occur. This article will discuss the importance of valuing family perspectives and suggest a possible framework to help family members share their perspectives with the team.

Team meetings are held in school settings, professionals and family members discuss the goals for the next year and family members are usually outnumbered by professional staff. This very intimidating process is not conducive to facilitating family involvement. Families tend to feel inferior, uncomfortable and disjointed from the team process. Furthermore, goal development is an academic activity not one that families typically do. What families do is dream and hope for their child. Right from the start of any pregnancy, mothers and fathers begin to envision their child. All parents, regardless of the presence of a disability, continue to dream about what their child will do throughout their lifetime. Family members dream!

When given the opportunity and a comfortable, safe environment, families often relish the chance to share their dreams for their child with disabilities. Most commonly, families dream that their child will walk, talk, go to regular school, get a job -- dreams that all families have for their children.

For many professionals, it is scary to hear a family's dreams because they often seem "unrealistic." Professionals feel pressured because they do not think they can make the dream come true. However, even if the dream seems "unrealistic," it is important for professionals to respect and validate the family's dream. This is very difficult for many professionals who believe that part of their job is to help families know what is "realistic."

BUT, the reality is that family members do not stop dreaming just because a professional says something won't occur. Dreams are often what keeps families going and moving forward. When professionals validate family dreams, they are saying the dreams this family has are worthwhile. This validation does not tell families that their dreams will necessarily happen but that they are worth striving toward.

One mother summed this up best when she said, "As often as professionals told me Melissa wouldn't talk, I kept hoping that she would. It was only through a long process that I came to realize that she wouldn't AND that talking wasn't nearly as important as communication." Once a family articulates their dreams, it is important for the team to find out the benefits the family sees to having their child fulfill these dreams. Each family will have different reasons why they want their child to do something. The reasons or the benefits the family shares with the team helps the team identify potential times to introduce or implement assistive technology during each day. This also helps the team understand and respect culture and value differences in families that are different from their own. From these reasons or benefits, meaningful outcomes can be identified. Let's look at an example: Meet Barb, Bill and their 4 year old daughter, Lindsay. Barb and Bill have shared their dreams with Lindsay's team -- let's look at their dreams:

OUR DREAMS FOR LINDSAY
• We want Lindsay to talk.
• We want Lindsay to have friends.
• We want Lindsay to go to regular kindergarten..
• We want Lindsay to contribute to society.

WHY DO WE WANT THESE DREAMS TO OCCUR:
• We want Lindsay to talk: - Lindsay communicates her daily needs quite effectively with us at home by sounds, eye-gazing and gestures. We know how she is feeling by her expressive facial features. If she could talk, we would want her to:
  • say "hello" to her grandma and grandpa on the phone each weekend and tell them what she has done that week.
  • talk with her friends at nursery school.
  • tell us about her day at nursery school.
• We want Lindsay to go to regular kindergarten - As you know, this is a major priority for us, which is why we have enrolled her in an inclusive nursery school. As much as possible, we want her to do what all the kids at nursery school are doing.
• We want Lindsay to have friends - We want Lindsay to be able to play and interact with children her own age. We are very social people and having friends is really important to us.
• We want Lindsay to contribute to society - We believe that this starts by playing an active role in her family. This means that she should have chores to do, do all family activities with us, and just be a part of everything that we do!! Being a family member is the first step to playing an important role in society.

USING THE FAMILY DREAMS TO DEVELOP GOALS
• We want Lindsay to talk.
  GOAL: Lindsay will communicate with her family and friends using a variety of communication options including sound production, talking, gestures, and digitized speech output systems.
  SAMPLE OBJECTIVE: Using a portable, digitized, direct selection communication system, Lindsay will tell her mom and dad about her day at nursery school. The team validates Barb and Bill's dream by listing sound production and talking first in the goal AND then they use the "why" behind their dream in the development of the objectives.
• We want Lindsay to have friends.
  GOAL: Lindsay will play and interact with her friends. Play materials will be adapted , as needed using the full range -- from no to low to high technology.
  SAMPLE OBJECTIVE: Lindsay will play games with her friends using a switch, a battery interrupter and battery-operated games. The team recognizes how important friends are to Barb and Bill and encourages Lindsay's active participation in play activities with her friends at nursery school.
• We want Lindsay to contribute to society.
  GOAL: Lindsay will participate in family activities.
  SAMPLE OBJECTIVE: Lindsay will assist in a variety of household chores and activities using a switch and an environmental control unit to turn on various electrical appliances.
  SAMPLE OBJECTIVE: Lindsay will cheer for her father at softball games using a portable cassette recorder, loop tape with recorded cheering, and a switch. Once again, this goal supports a valued belief that Barb and Bill have -- that Lindsay should be an active member of her family. Using this dream, the team identifies possible activities that would promote Lindsay's active involvement in family activities.

This process of using family dreams to develop goals that include assistive technology works for many families and teams. Families feel involved, invested and respected. Families feel and are an integral part of the team. Team meetings become process-oriented, where discussions occur that encourage and value each team member's perspective. The goals that are developed are meaningful, functional and address common outcomes of both family members and professionals. And most importantly, children are using assistive technology as a tool for active participation in their natural environments and routines.

Family Involvement in Assistive Technology Service Delivery

• Family members know their child differently than professionals. Family members see different skills and behavior at home and in the community than professionals see at school or in programming. Families also have information about their home life that will impact the features needed in the assistive technology equipment. Also, each family has their own values. Without family involvement, the recommended assistive technology may not meet the family's life style.
• Family members are the one constant in a child's life -- they are the only adults who are with that child through every life transition. Families are often responsible for transferring information from environment to environment.
• Family members live with the results of assistive technology decisions each day, every day. Only family members know what it is like to take a communication system to church for the first time. Only family members know what it is like to have to remember to charge a communication system after an exhausting day. Even the best clinical decisions about assistive technology are meaningless if they do not fit into a family's day to day life.

Resources

G. Donahue-Kilburg, Family Centered Early Intervention for Communication Disorders: Prevention and Treatment. Aspen Publication, 1992.

A. Turnbull and H.R. Turnbull, Families, Professionals, and Exceptionality: A Special Partnership. Merrill Publishing, 1986

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