Case Preparation

The Genetic Counseling Session

What would be the most appropriate next step for Tracey to take when preparing for this genetic counseling session?

  1. Work up a differential diagnosis for Mary to determine recurrence risk

  2. Talk to the social worker about Mary’s living situation and the relationship between Mary and her mother

  3. Alert Child Protective Services so Mary’s child will be properly cared for

  4. Research ways to talk to Mary about sexual abuse and the sexual abuse laws in the
    state

B is the most appropriate response. Tracey should talk to the social worker to get a better idea about Mary’s home situation.  Tracey will want to know how much support, if any, Mary has from her mother and others for her physical and emotional needs and decision making in pregnancy, and the possibility of future parenting. It is important not to focus on Mary’s disability but to identify resources and modifications that may be needed to provide appropriate health care and support (Smeltzer, 2007).

It is natural for genetics professionals to try to get to the bottom of the underlying cause for intellectual disability.  However, the genetic counselor must determine if providing Mary with a recurrence risk will be helpful to her decision-making, or if exploring the relevant psychosocial issues is more likely to provide the most beneficial information for both the counselor and the client.

Although up to 80% of individuals with mild developmental disabilities may experience sexual abuse (Lumley & Scotti, 2001), consensual sexual relationships exist among adults with intellectual disability.  It is inappropriate to assume Mary was the victim of abuse. Sexuality is a healthy part of any individual’s life, including adults with developmental disabilities. Additionally, reproduction allows adults with intellectual disability to participate in social roles often denied to them. Mary’s situation is not uncommon: although 60-90% of people with mild developmental disabilities want to be married and raise children, 75% of their parents are opposed (Aunos & Feldman, 2002). Thus, for women who have been denied control over their own choices, they may see the ability to reproduce as a powerful statement of independence.

Many parents with mild intellectual disability will ultimately have their parental rights terminated by protective services. This is due to many factors, including lack of support to parents as well as increased scrutiny of protective services. Additionally, parents with mild developmental disabilities are often presumed to be incompetent. Problems are often attributed to the parent’s developmental disabilities, instead of exploring whether there are other complicating factors or circumstances. Although one must balance parental rights with concerns for child welfare, parents with mild developmental disabilities can become successful parents with proper support. It is important not to assume that disabled women are unable to parent; many women with disabilities have been very successful mothers (Smeltzer 2007). Parenting skills can be taught to adults with mild intellectual disability by facilitating their enrollment in relevant classes and connecting them with appropriate social services.

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