PCPID Quarterly Meeting: June 16–17, 2011

Day Two: Friday, June 17, 2011

Call to Order

James T. Brett, Chair

The June 17, 2011 meeting was called to order by Chairman Brett who welcomed the Committee members. Meeting participants view a clip from the documentary film, “Life in the Shadows”. Following a brief discussion of the clip, Chairman Brett introduced Jill Eglé, Co-Executive Director of the Arc of Northern Virginia.

“Jill’s Journey” [Perspective from Self-Advocates]

Jill Eglé, Co-Executive Director, Arc of Northern Virginia

Ms. Eglé detailed her struggle to find a career that, not only paid well, but one for which she also had a passion. She stated that the elements of a true career and successful passion are a supervisor, colleagues, supported job coach, family members and good pay. Jill explained that she found the most success in careers that she started as a volunteer with her job coach, which eventually progressed into a paid position without natural supports. She has worked with the Arc of Northern Virginia for almost five years as an administrative assistant, an advocate, and as co- executive director.

Ms. Eglé then described her work related to Rosa’s Law, which successfully replaced the negative label of “mental retardation” with a respectful term, “intellectual disabilities.” Her focus now is education of the community; especially individuals’ power, about intellectual disabilities and the work of the Arc (before her move to New Orleans).

When asked by Dr. White-Scott about her plans in New Orleans, Ms. Eglé stated that her desire is to make great changes, statewide by working with the Arc of Greater New Orleans. In response to Ms. Sugarman’s question about presumed confidence, she spoke about how confidence can be conveyed through non-verbal communication by people with intellectual disabilities. Ms. Eglé concluded her presentation by stressing the importance of inclusion of people with intellectual disabilities in employment and in the community.

Role of the Ex-Officio Members and their Departments

Chairman Brett called on each ex-officio representative to speak about his/her agency and the role that they would play on the Committee.

Alexa Posny
Assistant Secretary, Office of Special Education and Rehabilitative Services, U.S. Department of Education

Assistant Secretary Posny shared facts and figures about the role of education in the lives of people with intellectual disabilities and how this role has been amplified in recent years. She stated that every child in this country has a basic right to learn and contribute to society, and having an intellectual disability does not alter that right. She then shared statistics that highlight significant progress for children with intellectual disabilities in their pursuit of an education:

• In 1975, over 1.75 million children with disabilities were excluded from schools and from society; and in 1970, only one in five children with disabilities were educated within the U.S. Schools and many states had laws barring children who had an intellectual disability.
• In 1975, President Gerald Ford signed into law the Education for All Handicapped Children Act. Today, 92 percent of students age 6–21 with intellectual disabilities are educated in regular classrooms for at least some part of the school day. The high standards set for students with ID have led to increased graduation rates.
• As of 2009, 39 percent of students with ID graduate with a regular high school diploma.
• Six percent receive a diploma of completion, and less than 20 percent of students with ID drop out of high school.
• The percentage of youth with ID who enrolled in any post-secondary school after high school has risen from 8 percent in 1990 to 28 percent in 2005. Approximately 21 percent of these students enroll in two year or community colleges, 20 percent enroll in vocational, business or technical school and 5 percent enroll in a four-year college or university.
• The reauthorization of the Higher Education Act has a new focus placed on students with ID. Institutions of higher education are provided grants to enable them to create or expand high quality inclusive model comprehensive transition and post-secondary programs for students with ID. In 2010, the U.S. Department of Education made 27 grant awards.

Assistant Secretary Posny then described some of the employment successes of students with ID stating that according to 2009 data, transition-age youth with ID achieve employment outcomes at about the same rate as other transition-age youth with disabilities (52%). She added that when youth with ID receive vocation rehabilitation supports, they are three times more likely to achieve competitive employment with supports than other transition-age youth in the same program.

In closing, Assistant Secretary Posny highlighted some of the goals of the Department of Education, including refining the current systems, policies and practices in order to ensure that all students are educated to the highest possible standard and that they are prepared for jobs in the 21st century. She stressed the importance of promoting the numerous ways in which we are more similar than different while respecting each other’s differences.

Margaret Schaefer
Senior Policy Advisor, Office for Civil Rights and Civil Liberties, U.S. Department of Homeland Security

Ms. Schaefer described how the Office for Civil Rights and Civil Liberties is responsible for monitoring a multitude of civil rights issues, including those that affect people with ID. This office is the lead for an Interagency Coordinating Council on emergency preparedness and people with disabilities, which ensures that the federal government supports the safety and security of people with disabilities throughout its programs and employment practices.

Ms. Schaefer emphasized a major achievement of the Council, “the National Disaster Recovery Framework”, a document which contains civil rights considerations for state planners, local planners and people at the community level when drafting recovery plans for their community following a disaster. Principles within the document have already been utilized by Federal Emergency Management Agency (FEMA) in their handling of the recovery following the deepwater oil spill and the more recent tornadoes.

Ms. Schaefer also noted that the Office on Disability Integration and Coordination, within FEMA, advises FEMA on any actions taken within the country that may affect people with disabilities.

Mary Kay Mauren
Senior Attorney/Advisor, the Equal Employment Opportunity Commission (EEOC)

Ms. Mauren shared the EEOC Offices help enforce Title VIII of the 1965 Civil Rights Act, which prohibits employment discrimination based on race, color, religion, sex, among other federal laws relating to equality. These offices allow people to discuss their employment situations and decide if they want to file a charge. Within the field of intellectual disabilities, the EEOC enforces Title I of the Americans with Disabilities which prevents the discrimination towards people with disabilities in employment situations. Ms. Mauren described the Congress’s decision, in 2008, to broaden the definition of disability to better include individuals with ID, and the regulations being set forth to enforce this broadening. She concluded her presentation by mentioning a fact sheet about employment for people with ID and citing examples of accommodations that may be received at various stages of employment. This information is on EEOC website, www.eeoc.gov.

Caffin Gordon
Associate Director, Policy and Quality Control Division, Office of Civil Rights, U.S. Department of Transportation

Ms. Gordon highlighted the following initiatives from the handout (included in the resource binder) she provided in the meeting:

• The CARS program promotes the awareness of child seats on the market specifically designed for children with various disabilities.
• Project Action promotes cooperation between the transportation industry and the disability community to increase mobility for people with disabilities.
• The Department of Transportation is involved with the Coordinating Council on Access and Mobility which ensures transportation is provided to individuals with disabilities and low income.

Dr. Rosaly Correa
Deputy Director, Office on Disability, U.S. Department of Health and Human Services (HHS)

Dr. Correa presented several initiatives and hallmark reports that summarize some of the work done by the Department of Health and Human Services in the field of intellectual disabilities.

• Closing the Gap, released in 2002 by Surgeon General David Satcher, is national blueprint to improve the health of persons with intellectual disabilities.
• The 2005 Call to Action by Surgeon General Carmona focused on the improvement of health and wellness of persons with disabilities, specifically with health care providers’ treatment of the entire person, not just the disability.
• The Office of Disability (OD) seeks to improve coordination of existing programs and service systems while ensuring optimal usage of funding. Among its challenges are the lack of a standard of training on disability and the lack of standards for certain medical equipment. The Office on Disability also leads Section 2402 which deals with monitoring home and community-based services and how they are delivered.
• The National Institutes of Health have a number of research centers that focus, specifically, on intellectual and developmental disabilities.
• The Centers for Disease Control and Prevention is working on filling in the gaps in data collection in relation to people with intellectual disabilities.

William D. Falsey
Special Assistant to the Director, U.S. Department of the Interior

Mr. Falsey explained the presence of the U.S. Department of the Interior on the Committee as an employer, as provider of services, and as purveyor of opportunities and experiences for individuals with intellectual disabilities. Ms. Roach elaborated on the role of this Department as provides support to efforts to prevent or minimize the occurrence of Fetal Alcohol Syndrome (FAS) among Native American populations. FAS is considered the number one preventable cause of ID.

Michelle Aronowitz
Deputy General Counsel, Enforcement and Fair Housing, U.S. Department of Housing and Urban Development (HUD)

Ms. Aronowitz detailed several programs, within HUD, that relate to housing for individuals with intellectual disabilities. The first, the Housing Capacity Building Initiative for Community Living, is partnership collaboration between federal agencies and community service providers to create housing opportunities and facilitate independent living in the community. Another program is Section 8-11 Supportive Housing Program for Persons with Disabilities, which provides grants to nonprofits to finance development of housing for very low-income persons with disabilities and the availability of social services. And, finally, the Multi-Family Housing Service Coordinator Program funds service coordinator to assist persons with disabilities locate and use supportive services provided by community entities.

Ms. Aronowitz also spoke on the enforcement responsibilities of HUD, as this department enforces the Fair Housing Act and Section 504 of the Rehabilitation Act of 1974 which allows people with intellectual disabilities to file complaints if they believe they have been discriminated against in housing and HUD will attempt to remedy the issue.

Richard Balkus
Associate Commissioner, Program Development, Office of Retirement and Disability, U.S. Social Security Administration (SSA)

Mr. Balkus explained the Office of Retirement and Disability is responsible for the disability research and employment policy for the Social Security Administration. This includes support of return to work for beneficiaries under the Supplemental Security Income Program for receiving benefits based on disability or under the Disability Insurance Program. Mr. Balkus also expressed a desire to see the simplification of incentives for the disability insurance program so it is easier for beneficiaries to utilize. He mentioned the SSA’s work relating to the transition of youth with disabilities, birth defects, and developmental disabilities, and the return of people with IDs to work.

Dr. Spitalnik interjected that, in the past, the SSA and PCPID have worked collaboratively in the evaluation of children with ID from minority communities, and in assessing their behavioral needs.

The explanation of the ex-officio’s departmental contributions to the Committee was followed by a discussion of the development and funding of training programs for professionals that would prepare them to provide services to people with intellectual disabilities, as well as the development of standards for medical equipment. This discussion was in response to the challenges cited in the presentation by Dr. Correa in her introduction to the programs currently run by DHHS.

(Brief Recess)