Magazine article The Exceptional Parent

The Challenge of Family Involvement

Magazine article The Exceptional Parent

The Challenge of Family Involvement

Article excerpt

In March 1978, my son, Adam, was born eight weeks prematurely and diagnosed with respiratory distress syndrome. Though critically ill, he recovered completely and became a typically developing toddler. Sixteen months later, my daughter, Sarah, was also born eight weeks prematurely. Sarah spent most of her early life in and out of hospitals and therapy programs. The births of my children changed the direction and focus of my life. In the 18 years since, I have been dealing with the issue of family involvement at local, state and national levels.

Never one to do anything by half, I began by leading parent meetings, teaching health care professionals, training parents to provide peer support and maintaining a hotline for parents of high-risk newborns. I worked with other parents and professionals who believed firmly in the value of family involvement.

In the early years, I frequently felt the frustration of being the token parent on many committees and task forces. While my fellow members would discuss the importance of family involvement, they failed to achieve that goal. They said I was an exception.

A flexible definition

Today, many people realize how important it is to listen to families and get them involved in the areas of health care, social services and education. But as a parent and the early intervention still coordinator for the state of Indiana, I know this is still a challenge for professionals and organization leaders.

Family involvement means incorporating family perspectives in the process of planning and decision-making in policy and program development, implementation and evaluation. Organizations need to define their goals and outline the specific roles that families can fill in achieving those goals. Clearly defined roles, responsibilities and expectations will assure successful collaborations and allow parents to feel like useful-not token--participants.

With their busy schedules, many families are hardpressed for time. If making a long-term commitment is difficult, families can participate in one-time activities. Parents can fill out surveys, attend coffee hours, serve as co-trainers or mentors or assume paid staff positions--the range of options is limitless.

If professionals take the time to understand why families decide to get involved--or not to get involved--they will be better-equipped to reach out and recruit families. …

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