Building Life-Long Visions:
Where do professionals fit in?
By Colleen Tomko
Parents are the key people in developing desirable outcomes for their children. They, along with their child, are the ones who must plan where the child’s future will lead. Everything that is done for a child should be a step toward those desired outcomes. Where they want and don’t want their child to live, work, and be involved as an adult, and what types of relationships and friendships they desire for their child are crucial for every decision. When planning long-term visions, parents need to be provided with information about all the issues that can affect their child’s overall quality of life.
Long-term visions are “not” based on achievement of “normalcy” they are based on meeting the desired outcomes of the individual and their family. The vision, as for all children, should not be based on having a child do in life what they are not good at. It should never focus on the attainment of skills alone but on a much bigger picture of providing the child the things that most people value, including things such as relationships, being a part of the community, using one’s abilities, and meeting the primary needs that all children have. Only after the family determines this type of long-term vision can truly meaningful short-term goals be developed.
The role of the professional is to support the child/family’s desired vision. The child and the family should determine their future as they would for any child. It is not the place of others to determine their future for them or attempt to make them conform to fixed rules and regimes. Professionals may have a child’s best interest in mind, but a family has their best interest in mind and in the heart.
Professionals, by virtue of being noted as “experts”, have a tremendous power to influence what parents do or don’t desire for their children. Parents may not be aware that they have a choice or will simply go along with what a professional told them because they figure “well, they are the professionals,” “they should know or know best.” However, the professional’s expertise is sometimes formed around a medical model approach of “fixing” and not on a person-centered model of optimizing the overall quality of life. Unless the professional has been thoroughly trained on disability rights and issues as well as overall child development, they do not have expertise in meeting all areas of need for the child. Unless they are working as partners to help the family/child achieve their long-term vision, they are simply conforming to the system and not to the child’s needs.
What the system has to offer does not determine the child’s needs. Children have the need and the right to be fully included in their schools, neighborhood programs, and communities. When all of a child’s needs are met in an integrated way, it enhances every area of their life. Professionals should not perpetuate having a child focus only on their deficits. They should use their expertise to adapt the system and the regular environments to meet all of the child’s needs. The focus must always remain on the child/family’s lifelong vision, the whole child, and viewing the child as part of the whole society.
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