Personal Meets Professional: Advocating on the Rights of Parents with Disabilities


Erin Andrews with her son Gavin
by Erin Andrews, PsyD, ABPP (APA Committee on Disability Issues in Psychology)

As a psychologist, my experience has primarily been in the clinical domain. However, on April 17, I was thrilled to expand my experience with advocacy when I represented the American Psychological Association at a congressional briefing on the groundbreaking National Council on Disability (NCD) report - Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children.

The briefing was a joint effort between APA, NCD, the National Association of Social Workers (NASW), and the Child Welfare League of America (CWLA). When I spoke to that room of congressional members and staff, I spoke from personal experience. My interest in parenting and disability goes beyond the professional. I am a disabled parent myself and have written about my pregnancy journey before.

Here is the back story. Rocking the Cradle is the first truly inclusive overview of reproductive and parenting rights among people with disabilities. The issues contained in the report impact me both personally and professionally.


Every day, I work with clients with disabilities, many of whom are parents or hope to become parents. Some of my clients acquired disabilities as parents already, and face systemic barriers to their full or optimal participation in this realm of life.

Many of my colleagues are totally unaware of the discrimination and environmental obstructions to:

·       reproductive health care for women with disabilities,
·       adoption by parents with disabilities,
·       access to assisted reproductive technology, and
·       gaining or retaining custody as a disabled parent. 

Health care providers, including psychologists, do not always receive adequate training to provide culturally-competent care to those with disabilities.

As a mother with a disability, I hold the same concerns as other disabled parents. Finding a wheelchair accessible daycare for my son, Gavin, was difficult even in a moderately sized city. Facilities that are accessible still have barriers such as heavy doors and blockades meant to keep children safe, but that also block my access.  

Even more disruptive are intrusive comments and stereotypes that reveal prejudices about my abilities as a parent. For example, others in my community routinely express surprise that I am Gavin’s mother, and if I am with an able-bodied female, others often assume he is her child. Recently, a family member assumed that my disability prevented me from effectively catching my son from falling down, even though an able bodied caretaker was closer to him and was also unable to prevent the fall.
 
Celebrating Gavin's first birthday

These issues are minor compared to the pervasive discrimination seen in the legal arena, where disabled parents are denied custody of their children based on the presence of disability alone, without reference to actual parenting ability, or the provision of reasonable accommodations to facilitate effective parenting. 

I recently read a media article about a married developmentally disabled couple having to go to court simply to be able to live together. Another news item described the experiences of parents whose newborn baby was removed from their care for almost two months because they were blind. The concept of appropriate support or assistance in order to keep the child with the parents is rarely addressed.

Personally and professionally, my peers do not always believe that this happens. Those who know me know I’m a good mother, but my greatest fear is being challenged in court for custody of my son; I worry that a woman with only one limb would never stand a chance.  

It was wonderful to work with Stefanie Reeves, MA (APA Senior Legislative & Federal Affairs Officer). She is familiar with all manners of disability legislation and knows who’s who on Capitol Hill. Stefanie, along with APA Disability Office staff, Anju Khubchandani, MA, and Mara Lunaria, prepared me for what to expect at the briefing. Stefanie and I also developed and solidified APA’s policy recommendations.

1.     Increase federal funding for research on parents with disabilities, to include the collection of data on prevalence, experiences, needs, and barriers faced by these families.

2.     Include specific protections for parents with disabilities in the Adoption and Safe Families Act, to provide for reasonable accommodations. Research suggests that parents with disabilities experience unfair challenges during the adoptive process.  Further, there is growing evidence that prejudicial practices are systematically employed in the termination of parental rights cases involving parents with disabilities (Fife, 2011; Lightfoot, Hill, & LaLiberte, 2010).  Congress should amend the Adoption and Safe Families Act so that these practices are specifically forbidden and that the appropriate agencies are directed to the law’s enforcement.

3.     Require that parenting assessments be fully accessible to parents with disabilities, and that custody evaluators receive training on conducting assessments on parents with disabilities and their children.

4.     Promote the education and understanding of the Americans with Disabilities Act and Amendment Act as it relates to the legal requirement of non-discrimination and require culturally competent training for health care providers on the assessment and treatment of people with disabilities. In a recent study in the Annals of Internal Medicine (Lagu et al., 2013), 22% of respondents indicated that they couldn’t accommodate a patient in a wheelchair. Gynecologists were least likely to accommodate a patient in a wheelchair. 

5.     Advocate for the United States to ratify the UN Convention on the Rights of Persons with Disabilities.  APA supports the ratification of this UN treaty as a means to not only reaffirm our commitment to protect the rights of disabled persons but also to set an example for the international community on this critical human rights issue. 

Participating in a congressional briefing was the experience of a lifetime. Initially, I thought about bringing my son. Ultimately I decided not to, as he is at an age that makes tolerating a long flight difficult. Also, most importantly - Gavin is a child, not a political statement. Instead, I was accompanied by my fiancé, Todd, who provided invaluable support.
 
Erin, Todd and Gavin

Although I have spoken at many university, regional, and national events, I have never participated in a congressional briefing, and I felt very nervous. The room was completely full, which was very exciting. Many of those present were individuals with disabilities.

My co-panelists included:

·       Jeff Rosen, JD (NCD Chairperson), who introduced the topic and the panel. Jeff communicated via American Sign Language and included his own experience of being raised by Deaf parents.

·       Robyn Powell, JD (NCD Attorney Advisor) spoke about authoring the groundbreaking NCD report as well as her personal experience as a disabled woman. I was frustrated but not surprised when she shared that numerous health care providers have offered her sterilization over the years, assuming she would not, could not, or should not have children.

·       I shared my own personal and professional experiences, and offered APA’s policy recommendations.  I highlighted the lack of meaningful research data about parents with disabilities, the importance of equal access to reproductive health care and adoption, and the need for disability cultural competence among health care providers.

·       Elspeth Slayter, PhD, MSW (NASW’s representative) shared her viewpoint from the field of social work and as the proud daughter of a parent with a disability.  She emphasized the need for social work training to teach the social model of disability, as opposed to deficit-based training.

·       Finally, Linda Spears (CWLA, Vice President of Policy and Public Affairs) spoke. She described a case where the legal, medical, and human service systems were so inflexible that the daughter of a woman with a disability was denied an organ transplant because reasonable accommodations were not being provided to allow her mother to effectively meet her post-transplant needs.

Each and every presenter expressed the message that parents with disabilities have rights and that those rights are, and can be, consistent with the best interests of their children. In order for that to occur fully, state, local, and national government policy changes must be made. We hope Washington heard, and I know many were listening.

I’m proud to have represented psychology and APA, and proud to have had my voice as a disabled mother heard.

I’m proud to have spoken up on behalf of the at least 4.1 million parents with reported disabilities in the United States.

Most of all, I’m proud to have been a voice for my son, Gavin, and the at least 6.1 million children in the United States who have parents with disabilities.

Call to action:

APA has wonderful, well-researched practice guidelines for working with people with disabilities (link to: http://www.apa.org/pi/disability/resources/assessment-disabilities.aspx) and performing child custody evaluations (link to: http://www.apa.org/practice/guidelines/child-custody.pdf) – psychologists and other provider should use them!

Encourage your representatives in the US Senate and House of Representatives to support APA’s policy recommendations on this important issue. For example, the CRPD is expected to come before the senate again this year. We need knowledgeable people to help dispel myths that this treaty harms families, when in fact it promotes the rights of families, many of whom have one or more disabled member.

Erin Andrews is a rehabilitation psychologist at the Central Texas VA Health Care System and assistant professor at Texas A&M Health Science Center College of Medicine. To contact Erin, email drerinandrews@gmail.com.


References:

Fife, B. E. (2011). A study of the quality of psychological assessments of parents with disabilities involved in termination of parental rights cases. Dissertation Abstracts International: Section B: The Sciences and Engineering, 71(10-B), 6485.

Lagu, T., Hannon, N. S., Rothberg, M. B., Wells, A. S., Green, K. L., Windom, M. O., et al. (2013). Access to subspecialty care for patients with mobility impairment: A survey. Annals of Internal Medicine, 158(6), 441-446. doi:10.7326/0003-4819-158-6-201303190-00003

Lightfoot, E., Hill, K., & LaLiberte, T. (2010). The inclusion of disability as a condition for termination of parental rights. Child Abuse & Neglect, 34(12), 927-934. doi: 10.1016/j.chiabu.2010.07.001

National Council on Disability (2012). Rocking the cradle: Ensuring the rights of parents with disabilities and their children. Washington, DC: Author. Retrieved from: http://www.ncd.gov/publications/2012/Sep272012/


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