PCPID Quarterly Meeting: February 15–16, 2007

Mr. Romano resumed the meeting by noting that the goal of the Subcommittee on Public Awareness is to find a way to move the public agenda in a positive direction for people with intellectual disabilities. He also noted that the subcommittee had focused on four priority areas and that they would begin with criminal justice. He then introduced the first speaker on the criminal justice panel, Olegario Cantos VII, Esq., Associate Director of Domestic Policy at the White House.

Mr. Cantos noted that he had alerted the White House of the Committee’s attention to this important topic. Mr. Cantos stressed the importance of equal access to the criminal justice system for people with intellectual disabilities, both for victims and perpetrators. In particular, he addressed the need to protect victims with intellectual disabilities through better reporting of abuse and better training for first responders, prosecutors and judges. He also stressed the need for victim-witness, and crime prevention programs for people with intellectual disabilities. Mr. Cantos concluded by urging the Committee to use their voice as a Presidential Advisory Committee to talk about people with intellectual disabilities and the criminal justice system in order to affect change throughout the government.

Mr. Romano introduced the final speaker on the criminal justice panel, Committee Member William Edwards, Esq.

Mr. Edwards began by outlining some of the problems that criminal perpetrators face upon entering the criminal justice system, most notably, not being properly diagnosed as having an intellectual disability and noted that eight of his own clients were not diagnosed until they were on death row. He stated that lawyers and judges often confuse intellectual disabilities with mental illness and because of this misconception, appoint experts to testify who are not qualified to do so. He also stressed the potential for abuse while being questioned by the police.

Mr. Edwards stated that in many cases, perpetrators with intellectual disabilities become victims of rape and abuse once inside the criminal justice system and often before they are brought to trial. For those who serve jail time, after their release, there is a lack of services and supports, they have lost their SSI benefit and they often end up on the streets. Mr. Edwards concluded by discussing false confessions from people with intellectual disabilities and cited specific examples.

Mr. Romano then addressed the issue of the value of people with intellectual disabilities and the importance of promoting their competence and value to society. He highlighted the need for more research and better distribution of the research that has already been done.

Mr. Romano then introduced Dr. Gary Siperstein, Professor of Psychology and Human Services at the University of Massachusetts, and Director of the Center for Social Development and Education.

Dr. Siperstein began by presenting statistics to demonstrate that many of the societal attitudes regarding people with intellectual disabilities from the 1950’s were still prevalent today and that both adults and children believe individuals with intellectual disabilities are less capable than they really are. He observed that there is much left to be done to change societal attitudes about the competence of people with intellectual disabilities.

Mr. Siperstein also noted his experience with juries that had false and misleading notions about people with intellectual disabilities. He cited Atkins v. Virginia in which the jury seemed to believe that if a person has knowledge, they can’t have an intellectual disability. He also noted that statistics reveal that the majority of the public believes people with intellectual disabilities can work successfully, but that adults do not believe that students with intellectual disabilities should be in regular schools and classrooms. The youth, however, believe that students with intellectual disabilities should be in their schools, but not necessarily in academic classes. The youth surveyed also don’t see people with intellectual disabilities as potential friends. These attitudes, Dr. Siperstein noted, could be related to fact that less than 25% of people personally know or have worked with a person with intellectual disabilities so there have not been many opportunities for them to witness their competence.

Dr. Siperstein ended by observing that as media exposure, personal exposure and volunteer opportunities with organizations such as Special Olympics increase, so does acceptance, inclusion and perceived competence.

Mr. Romano then opened up the floor for questions of either William Edwards or Dr. Siperstein (Mr. Cantos was obliged to leave immediately following his remarks).

Based on questions, the Committee then discussed with the presenters the need for a clearinghouse of success stories to promote the competency of people with intellectual disabilities. They also discussed the need for additional focus on people with intellectual disabilities as victims and increased training for the police, particularly regarding the differences between mental health issues and intellectual disabilities. It was also suggested that issues facing people with intellectual disabilities be integrated into law school curriculums.

The Committee discussed with Dr. Siperstein the importance of demonstrating not just competence, but an understanding of the varying degrees of competence so that people with intellectual disabilities are not viewed in terms of either competent or not, but rather as individuals with varying degrees of competence. They also discussed the importance of socialization and relationships for children with intellectual disabilities with their non-disabled peers. He noted that while progress is being made, there is a long way to go and it will require a lot of work on the part of teachers and principals to promote positive social relationships. He also commented that while legislation is important, it is not enough to think that it is all that is needed to change the public’s attitudes about people with intellectual disabilities.

The Committee discussed culpability and competency (mens rea) in the criminal justice system and the challenges that are presented when someone with an IQ in the 60-75 range is accused of, or commits a crime. They also discussed community participation and service as a means of demonstrating competency, and the importance of parental involvement in shaping future attitudes about people with intellectual disabilities.

Mr. Romano then concluded the presentation by the Subcommittee on Public Awareness and the Committee recessed for lunch.

After a lunch break the meeting resumed.

Chairman Sweezy introduced Wade F Horn, Assistant Secretary for Children and Families, Department of Health and Human Services.

Dr. Horn began his remarks by recognizing the importance of people with disabilities to the President, as evidenced by his announcement of the New Freedom Initiative just 12 days after taking office. Now, six years into the administration, Dr. Horn encouraged the members to be bold in their recommendations and work to set the agenda for the next 50 years. He acknowledged the importance of the Committee’s efforts to change the name of the Committee and pointed out the significance of the word “people” in the term “people with intellectual disabilities.” He noted that this word focuses on the person first, not the disability. He also noted the importance of changing from the preposition “on” to the preposition “for.”

Dr. Horn commented on the importance of quickly translating research into a vernacular that the average person can understand. He also noted that Federal government needs direction and recommendations on how to translate research into action steps for the government. He stressed the importance of a multi-level focus of culture, community, family and individuals to empower and integrate people with intellectual disabilities in their communities. Finally, Dr. Horn encouraged the Committee to be bold and think outside of the box. He then invited the Committee to ask questions.

In response to questions, Dr. Horn stressed the need to not be encumbered by questions of budget constraints and timelines, but to be creative and think outside the box. He used as an example the Welfare Reform Act of 1996 and noted that the first response of any program administrator should not be what the person can’t do, but what the person can do to be self sufficient and integrated into the work force.

Dr. Horn also addressed unintended consequences and negative incentives and urged the Committee to consider what recommendations can be made to identify and phase out such bad policies. He encouraged the Committee to consider every avenue for change—legislation, executive order, etc. He then stressed that it is important to make the case to employers that reasonable accommodations are not generally expensive and they are not charity, but are in the best interest of the employer in order to secure reliable, productive employees. Dr. Horn encouraged the Committee to challenge employers, popular culture and society at large to work to integrate people with disabilities into American life—including the workplace.

Mr. Sweezy interjected and encouraged the Committee to consider moving beyond the scope of what the Federal Government can do and make employers, school districts, churches and communities recognize the value of people with intellectual disabilities. He highlighted the problems of simply asking for more Federal money and suggested instead that the Committee reach out to the private sector, to advocacy groups and the public sector to figure out ways to do a better job.

Dr. Horn related his experience with counseling fathers of children with disabilities and providing them with information to help them get involved in the lives of their children with disabilities. He also related that family break-up rates are higher in families that have children with disabilities and that we cannot just resign ourselves to that fact, but must work to do something about it. Dr. Horn concluded his remarks by encouraging the Committee to establish a vision of what the nation would look like 25 years from now if everything they recommended was established and then build a roadmap for how to get there.

The Committee then took a brief recess.