President’s Committee

for People with Intellectual Disabilities (PCPID)

Committee Meeting

February 22-23, 2016 

~Draft Minutes~ 

Citizen Members

Julie Petty, Chair

Peter Berns

Jack Martin Brandt 

Jim Brett

Kenneth Capone 

Micah Fialka-Feldman

Dan Habib

Zachary W. Holler

Stacey Milbern (via telephone)

Lisa M. Pugh

Michelle “Sheli” Reynolds, PhD 

Deborah Spitalnik, PhD 

Mike Strautmanis

Ricardo T. Thornton, Sr.

Elizabeth Weintraub

Sheryl White-Scott, MD 

Betty Williams (via telephone)

Ex officio Members and Representatives

Regina “Gina” Kline, Esq. for Mark Gross 

Representing the Honorable Loretta Lynch

Attorney General, U.S. Department of 

 Justice

Tinisha Agramonte (via telephone) 

Representing the Honorable Penny Pritzker 

Secretary, U.S. Department of Commerce

Richard Davis for Jennifer Sheehy

Representing the Honorable Thomas Perez 

Secretary, U.S. Department of Labor 

Yvette Rivera & Howard Caro-Lopez, PhD 

Representing the Honorable Anthony Foxx

Secretary, U.S. Department of 

 Transportation 

Sue Swenson and Corinne Weidenthal, EdD 

Representing the Honorable Arne Duncan 

Secretary, U.S. Department of Education 

Brian Parsons (via telephone)

Representing the Honorable Jeh Johnson 

Secretary, U.S. Department of Homeland 

 Security

Stephanie Enyart

Representing the Honorable Wendy Spencer

CEO, Corporation for National and 

 Community Service 
Leola Brooks (via telephone)

Representing the Honorable Carolyn Colvin 

Commissioner, U.S. Social Security 

 Administration

Mary Kay Mauren 

Representing the Honorable Jenny R. Yang

 

Gary Blumenthal

Representing the Honorable Clyde E. Terry 

Chair, National Council on Disability

Chair, Equal Employment Opportunity 

 Commission

Special Guest Speakers and Presenters

Judith E. Heumann 

Special Advisor for International Disability 

 Rights

U.S. Department of State 

Michael Gamel-McCormick, PhD 

Associate Executive Director for Research 

 and Policy 

Association of University Centers on 

Disabilities (AUCD)

Larissa Crossen 

Program Specialist

Administration for Community Living 

 (ACL)

Administration on Intellectual and 

Developmental Disabilities (AIDD)

Ophelia McLain, DHA 

Director

Carol Quirk, EdD 

Executive Team of the SWIFT Center

Executive Director

Maryland Coalition for Inclusive Education 

Serena Lowe, PhD 

Senior Advisor 

ACL-Center for Disability and Aging 

 Policy (CDAP)

Eric Weakly, MSW, MBA 

Aging Services Program Specialist

ACL-CDAP

Molly Burgdorf, JD 

Senior Advisor 

ACL-CDAP

ACL-AIDD

The Administration on Intellectual and Developmental Disabilities (AIDD) - PCPID Staff

Aaron Bishop, MSSW

Commissioner, Administration on 

 Disabilities and PCPID Designated 

 Federal Officer (DFO)

Ophelia McLain, DHA 

Director, ACL-AIDD

Madjid “MJ” Karimi, PhD, CPH 

PCPID Team Lead

Sheila Whittaker

PCPID Program Assistant

2 
Meeting Proceedings

DAY ONE (February 22, 2016) 

Greetings and Introduction of PCPID Chair 

Aaron Bishop, Commissioner 

Administration on Disabilities (AoD)

Designated Federal Officer (DFO)

President’s Committee for People with Intellectual Disabilities

On behalf of the U.S. Department of Health and Human Services (HHS), Commissioner Aaron 

Bishop welcomed participants and thanked PCPID members for joining the meeting. He shared 

with the members that this full Committee meeting will follow a special agenda, which includes 

several inspirational guest speakers and presenters. Commissioner Bishop stated that the

meeting presentations are designed to assist the members with overall preparation of the 2016 

Report to the President (RTP). He, then, turned the meeting over to the PCPID Chairwoman, 

Ms. Julie Petty.

Welcoming Remarks, Call to Order, and Introductions

Julie Ann Petty 

Chair 

 

The PCPID Chairwoman, Ms. Julie Petty, welcomed participants and called the meeting to order. 

She requested all members to introduce themselves and identify their affiliations with the 

Committee. This was done in a “round robin” format. 

Approval of Agenda and Minutes (November 9-10, 2015)

PCPID Chair and Members

Chairwoman Petty made the main motion to approve the minutes of the PCPID November 9-10, 

2015 meeting. Ms. Liz Weintraub and Mr. Ricardo Thornton seconded the motion to approve 

the minutes of the last meeting. Chairwoman Petty also made a motion to approve the meeting 

agenda, which was seconded by Ms. Lisa Pugh and Mr. Michael Strautmanis. The Committee 

voted to accept the minutes as well as the meeting agenda. Motion carried.

PCPID Guest Speakers

Commissioner Bishop introduced the first guest speaker, Ms. Judith “Judy” Heumann, who is the 

Special Advisor for International Disability Rights at U.S. Department of State. He referred to 

Ms. Heumann as “a living legend” in the field of disability. Commissioner Bishop added that 

Ms. Heumann was invited to share her experience with the Committee on disability data both at 

a national and international level. 

Judith E. Heumann

Special Advisor for International Disability Rights, U.S. Department of State 

Ms. Heumann started her presentation by thanking the PCPID members for the work they have 

done for years as well as giving her the opportunity to share the changes, occurring in the field. 

3 
She added that PCPID is one advisory Committee that is cutting-edge and is a risk-taker. The 

Committee has helped guiding the path for future of disability policies for many decades. 

Ms. Heumann took the members through a short history of disability legislation. She stated that 

the 1960s were when the nation began to see disability legislation move forward. By the late 

1960s, the United States (U.S.) also experienced the first federal law, addressing the issue of 

accessibility and the establishment of the U.S. Access Board. In the 1970s, the nation saw more 

progress with the passage of Title V of the Rehabilitation Act, and the provisions in the 

Rehabilitation Act of Independent Living, the Education for All Handicapped Children’s Act, 

and the regulations for Section 504. Ms. Heumann expressed belief that one of the dynamic 

changes over many decades is the role that people with disabilities, themselves, played in 

advancing the disability rights movement. This is important, because the primary voices in the 

field should be made by people with disabilities from all walks of life. 

Ms. Heumann noted that it is pivotal to create a society where there is an expectation that all 

individuals are living and are integrated in the community, and receive proper services and 

support. It is critically important that people with disabilities live in their communities amongst 

their peers; and their peers should not necessary be others with disabilities. She stated that the 

Convention on the Rights of Persons with Disabilities (CRPD) is a valuable resource and was 

modeled after the Americans with Disabilities Act (ADA). Unfortunately, there is a significant 

amount of discrimination that goes on in various countries around the world, which is developed 

by the low expectations from people with disabilities and their families.

Ms. Ms. Heumann reiterated that the role of PCPID is to take the lead on supporting communitybased initiatives; helping families to be able to keep their children at home; and enabling 

individuals to continue to reside in their communities. In a number of countries around the 

world, there are restrictions regarding the parents’ involvement, employment, and highereducation and use of technology. This is while people with disabilities comprise 15% of the 

world’s population. 

Open-Forum Discussion

Presenter-Full Committee

On behalf of the Committee, Mr. Gary Blumenthal thanked Ms. Heumann for her continued 

support of PCPID in the last twenty years. Ms. Heumann expressed gratitude and added that in 

the U.S., many agencies collaborate on the disability issues. However, she noted that regrettably 

most immigrants with disabilities in the U.S. are not being appropriately served by many 

agencies. We cannot automatically expect that people who have just immigrated to the U.S. will 

have no problem understanding our laws on education and community living, and easily pursue 

their dreams which otherwise they would never have been able to exercise in their own countries. 

Ms. Liz Weintraub noted that one of the struggling areas for people with disabilities is 

inclusion—especially, inclusiveness in education, employment and career development. Mr. 

Dan Habib stated that the community still views special education as a place, and not a set of 

support, and does not fully recognize that general education is for every student. Some other 

problems are that the community believes parents are responsible to enforce the Individuals with 

Disabilities Education Act (IDEA). Also, the communication supports are not being introduced 

to students at an early age. The communication assessments are not part of the individualized 

education plan (IEP) process, so young students with disabilities do not have a voice from very 

4 
early on, and then the low expectations follow because they think they have nothing to say. 

Finally, the “teacher training programs” should incorporate universal design of learning, and 

multi-tiered systems of support (MTSS) as well as positive behavioral support as a requirement. 

Ms. Heumann agreed and responded that unfortunately these issues are still sensible in 2016. It 

is important to benchmark communities that do well in implementing a creative work; especially, 

on the issues revolving around dropout rates in students from a diverse ethnic and socioeconomic background. 

Mr. Jim Brett asked the guest speaker if she had specific suggestions for topics that PCPID

should consider. Ms. Heumann replied that it is important to get the message out that people 

with significant disabilities deserve proper education with high expectations, and they have 

choice in type of education and employment they choose to pursue. Dr. Deborah Spitalnik noted 

that the state of New Jersey supported many immigrant families who were not able to receive 

services in their own countries. The communities in the U.S. also need an education system 

where those who provide supports reflect the communities that they serve. Ms. Heumann agreed 

and added that the Department of State encourages ambassadors to hold roundtables with civil 

society organizations to learn more about the situations in their countries and get a better sense of 

weaknesses that exit in their countries. The U.S. Congress also requires submission of the 

“Human Rights Report,” which is done in every country and section six of the report refers to 

disability policy work. The Human Rights Watch, as U.S. based organization, meets with 

governments, the United Nations, regional groups like the African Union and the European 

Union, financial institutions, and corporations to press for changes in policy and practice that 

promote human rights and justice around the world.

Mr. Ken Capone shared with the Committee that Maryland’s Self-Advocacy Group submitted 

legislation to phase out sheltered workshops and set minimum wage. Mr. Richard Davis thanked 

the guest speaker for challenging the Committee to be cutting-edge and to confront issues 

revolving around low expectations, the segregations that result from racism, and societal 

attitudes around so called “ableism.” Ms. Sue Swenson stated that the CRPD requires the 

governments to support organizations that provide services to people with disabilities within 

various nations and call for collaborations at an international level. She asked if it is possible to 

go forward without ratifying to support and fund some of these initiatives and simply connect to 

Disabled People Organizations (DPOs). Ms. Huemann responded that the Article 32 in this 

Treaty addresses the importance of inclusiveness in the field. Both the Department of State and 

United States Agency for International Development (USAID) are taking the lead on the efforts 

that ensure integration of disability services into grant-making mechanisms. Meanwhile, they 

engage in stronger advocacy, law training, and leadership development. She added that 

regrettably the current reorganization of the National Institute on Disability, Independent Living, 

and Rehabilitation Research (NIDILRR) would prevent this agency to use the Office of Special 

Education and Rehabilitation Services’ authority to engage in international disability work.

Michael Gamel-McCormick, PhD 

Associate Executive Director for Research and Policy

Association of University Centers on Disabilities (AUCD)

Dr. Gamel-McCormick began his presentation by sharing a personal story from the time when he 

was an educator in early childhood education and intervention. He shared this story to 

emphasize the importance of the “Zero Reject” that is embedded within the Education for All 

5 
Handicapped Children Act of 1975. The Zero Reject states that nobody should get excluded 

from education. Another important area of the 1975 Act is the “Least Restrictive Environment.” 

It is crucial to be connected to communities, neighborhoods, and people who we live with on a 

daily basis. Dr. Gamel-McCormick added that the No Child Left Behind uncovered what was 

happening with subgroup of students: a) those who were English learners, living in poverty, and 

b) those of different races and ethnicities, and disabilities throughout the country. One of his 

group research studies of the No Child Left Behind showed that two factors predicted outcomes 

for younger learners: 1) inclusive education (if they were enrolled and connected with their

developing peers), and 2) if they had early intervention and early childhood education. Dr. 

Gamel-McCormick noted that “inclusive” is not a program; it is a philosophy and approach to 

education overall. He shared with the members that in the reauthorization of Every Student 

Succeeds Act (ESSA) that took place in December 2015, there are 106 mentions of students with 

disabilities in the general education. He added that the indicator of high-school graduation rates 

in 2001 compared to high school graduation rates in 2013 for students with disabilities increased 

16 percentage points. So, with high expectations for students, educators can get them the 

resources they need to achieve great things in life. 

Open-Forum Discussion

Presenter-Full Committee

Ms. Lisa Pugh specified that unfortunately students with the most significant intellectual 

disabilities (ID) still experience a tremendous amount of segregation in school; particularly, in 

high school level. She emphasized the importance of parental involvement, because there is

body of research illustrating that when parents have higher expectations, their child is three to 

five times more likely to experience high success rates in education, community living, 

employment, and other aspects of adult life. Ms. Pugh asked the guest speaker: a) what are some 

factors that can contribute to parents’ engagement and for them to build high expectations? and 

b) is it unethical to build up the high hopes and visions, if the adult system is not ready for 

inclusiveness? Dr. Gamel-McCormick responded that the “Promoting the Readiness of Minors in 

Supplemental Security Income (PROMISE) Initiative” is currently being implemented in six 

localities around the country and part of this initiative is to work with families about expectations

and their possible outcomes. He expressed personal belief that it is only unethical “not to talk 

about the expectations.” Mr. Zach Holler agreed and also added that on a different note, there is 

not a one-size-fits-all approach when it comes to integration in special education— nothing that 

will work for all districts (i.e., reverse mainstreaming or reverse inclusion). Ms. Yvette Rivera 

stated that one other important factor to consider is to provide “implementation tools,” because a 

community can have all the best policies in the world; however, with no proper implementation 

strategy there will be no optimal outcome. 

Announcements

Commissioner Bishop shared with the members that the Committee has been invited to provide 

presentations on its 2015 Report to the Federal Communications Commission in March, the

American Network of Community Options and Resources (ANCOR) Conference in May 2016, 

and finally a briefing to the members of Congress will be scheduled. 

Dr. MJ Karimi, PCPID Team Lead, introduced all the federal panel invitees who were scheduled 

to provide presentations on their recent initiatives, and to share project data, analysis and 

interpretations.

6 
Focus Area # 1: Family Engagement early on in the process to support high expectations for 

students with disabilities

Data Analysis, Interpretation, and Presentation 

Larissa Crossen, ACL-AIDD Program Specialist

Ms. Larissa Crossen started her presentation by providing an overview of the family support 

initiatives that the AIDD has funded since 1999. Through the Project of National Significance 

(PNS), the AIDD awards grants/contracts that enhance independence, productivity, inclusion and 

integration of people with I/DD into the community. What fell under PNS is also the Family

Support 360 (i.e., Family Support and Community Access). Between 1999 and 2004, the AIDD 

awarded 54 family support projects, nationwide, to support families of individuals with I/DD. In

2004, the agency awarded the first of five grants on planning and implementation of the projects 

to 21 entities. Between 2004 and 2009, AIDD had the Family Support 360 Centers as well as the 

military centers; another funding opportunity was also granted in 2010 to five initiatives on

Family Support and Community Access. 

Ms. Crossen stated that families, through navigators at one-stop-shops, could identify services 

and support based on their individual needs. For military families, the navigator has helped to 

bridge the gap between military and civilian systems. Additionally, the family support 

community access projects focus on systematic change and target specific communities to 

engage in capacity building. For example, some areas of work in previous years were to 

establish individual development accounts for people with I/DD, provide supports to fathers and 

grandparents, and other non-traditional caregivers. Some other accomplishments involved 

working with the school systems to develop and improve programs in IEPs, offering support to 

families, whether it was food, clothing, transportation, or anything that was identified during the 

IEP process. Finally, the AIDD funds the Community of Practice (CoP) for Supporting Families 

of individuals with I/DD. The overall goal of the CoP is to support families so they can support, 

nurture, love, and facilitate opportunities for achieving self-determination and independence 

throughout the individual’s lifespan. 

Dr. Sheli Reynolds reported that the Title II of the DD Act calls for funding of the family support 

projects. She added that when family support initially started out, it focused on the system 

change initiatives. Then, it moved to target populations that were underserved as well as the

military families. Recently, the ACL-NIDILRR has funded the University of Chicago, Illinois, 

to focus on research on family support. The Committee should ensure that this research will 

include individuals with I/DD and their families. Dr. Reynolds stated that many of the national 

initiatives or demonstration projects have been outside the purview of the state service systems. 

The National Association for State Directors for Developmental Disabilities Services has 

therefore recognized the need for partnerships to bring the work of family movement with the 

work of the state structure together. 

Dr. Reynolds explained that the first couple of AIDD grant years were spent on creating a 

common language. The concept of “families’ life course framework,” was established through 

these grants. It enabled all stakeholders to have conversations at a policy-level and based on 

one-on-one planning with individuals and families. Dr. Reynolds noted that the Health 

Resources and Services Administration (HRSA) funds the family-to-family health informatics 

centers. Currently, there is zero funding for family support initiatives and specifically for 

7 
families that have adult children with I/DD. This is despite the fact that 87% of adults with 

intellectual disabilities (ID) and/or other developmental disabilities (DD) live in a family home. 

Ophelia McLain, DHA (on behalf of Katherine Cargill-Willis, AIDD Program Specialist) 

ACL-AIDD Director

Dr. Ophelia McLain stated that, in 2011, the AIDD awarded funds to the University of 

Minnesota (UMN) for a five-year cooperative agreement to ascertain the longitudinal data in the 

areas of employment and residential settings for people with I/DD. The Family Information 

System Project (FISP) is currently looking at: a) how many people in the states are using 

publicly-funded services while living at home with family members, b) how many people are on 

the waiting list, and c) how much is being spent by the states on the residential settings of people 

with I/DD. Research by the UMN revealed that 61% of people with I/DD live at home that they 

own or lease, 12% live in some other settings such as foster home or host home, and 51% live in 

a shared by three or fewer people with disabilities. In 2013, 700,000 individuals were Medicaid

recipients and approximately 175,000 of them were children or youth (21 or younger); over 

500,000 individuals were adults with I/DD (22 years or older). Nearly, 88% of individuals 

younger than 21 lived in the home with a family member, and 12% lived in some other setting 

such as foster or group homes. Many received waiver-funded supports in the home of a family 

member.

Dr. McLain further suggested and explained why the National Health Interview Survey (NIHS) 

should include questions about I/DD for both children and adults, update prevalence estimates 

for I/DD (e.g., Autism Spectrum Disorder) every year, and stay current with information about 

individuals with I/DD who are not receiving Medicaid LTSS. 

Open-Forum Discussion

Workgroup Members, Data Analysis Team, Full Committee

Mr. Blumenthal thanked the presenters and added that every dollar spent on family support 

reduces the trends of residential services, and with regards to residential services, the cost is 

becoming quite difficult to sustain within the budget. He recommended that members invite a

representative from the Centers for Medicare & Medicaid Services (CMS) to participate in 

PCPID meetings and discussions. Dr. Reynolds pointed out that the states are becoming creative 

with their family support waivers, but strict guidelines remain in the process. Mr. Strautmanis 

encouraged the Committee to collaborate with the U.S. Digital Service in these areas. Ms. 

Swenson added that the real approach to digital thinking is to start considering big data, and 

understand how it is possible to describe people with disabilities without placing them in 

different categories. The digital strategy could also help advocates to understand how people, 

themselves, define their functional differences.

Ms. Weintraub raised concerns over the self-advocacy voice that may be overshadowed by 

families at times. Dr. Reynolds responded that both individual and family voices offer unique 

perspectives, so they both need to be invited at the discussions table. Dr. Spitalnik agreed and 

added that building systems of support that transcend the distinctions between school systems 

and adult service systems play a major role in such cases. Mr. Brandt noted that there are 

individuals in foster care and other environments where expectations do not really exist. Dr. 

Reynolds and Dr. McLain expressed belief that family is defined differently and in most cases 

the definition depends on one’s cultural belief. 

8 
Ms. Pugh asked about the role of family navigators. “Are they connecting families to disabilityspecific services for their individual child, or are they connecting families to a broader 

community and to generic types of services?” Ms. Crossen responded that for the Family 

Support 360 Centers in the military projects, the basic role of the navigators was to start with 

identifying or developing a plan—this plan contained all services and support that the family 

needed either at home or the community. Dr. Reynolds added that the government sector is 

starting to recognize the important role of the navigators in social services or medical systems. 

Dr. White-Scott noted that it appears that the communities need data and anecdotally family 

navigators are out there; however, they might not be known to the general public. Ms. Stacey 

Milbern encouraged the Committee to also explore the concept of disparity in services through 

the 2016 RTP. 

(Afternoon Recess) 

The PCPID Members watched and discussed the preview of a new film by Mr. Dan Habib, 

entitled “Intelligent Lives” 

AFTERNOON SESSION

Focus Area # 2: Federal Education Policies and enforcement strategies 

to end segregation in schools 

Data Analysis, Interpretation, and Presentation

Carol Quirk, Ed.D., Executive Team of the SWIFT Center

Dr. Carol Quirk began her presentation by stating that although she works for Maryland 

Coalition for Inclusive Education, the majority of her time is spent with the SWIFT Center (K8), which is the National Center for Schoolwide Inclusive Reform, focused on promoting 

inclusive practices. One potential outcome of the SWIFT Center is to end segregation of 

students with disabilities who are placed in more restrictive settings by building state and local 

capacity. The grant was funded specifically to work in elementary and middle schools to build 

state and local capacity to provide academic and behavioral support to improve outcomes for all 

students. The project focuses on students with disabilities, including those with the most 

extensive support needs. The Center has five state partners: Maryland, New Hampshire, 

Vermont, Mississippi, and Oregon (64 schools across the country). Within these partner states, 

the project works with schools and districts. The Center’s philosophy is that, together, the 

community can transform education so that it benefits each and every student, their families, and 

ultimately the community.

Dr. Quirk explained that simply being physically present in a general education classroom does 

not equate to “being included.” She shared some historical pictures of special education 

classrooms and referred to the level of communication with students at that time. Furthermore, 

9 
she expressed that students who lack access to the general curriculum and to their grade level 

peers are missing out on educational opportunities. The federal laws (e.g., the IDEA) state that 

special education means specially designed instruction, and later define it as a tool to address the 

unique needs of students with disabilities. There could be any number of materials, 

environments, social, emotional or program modifications that are specifically related to that 

particular disability. The IDEA requires each public agency to ensure that a continuum of 

alternative placements is available to meet the needs of children with disabilities for special 

education and related services. Special classes, separate schooling or other removal of children 

with disabilities from the regular education environment only occurs if the nature or severity of 

the disability is such that education in regular classes with the use of supplementary aids and 

services cannot be achieved satisfactorily.

Dr. Quirk illustrated data regarding the placement of students with disabilities in self-contained 

settings and made the point that the data has not changed much over the years. A number of 

researchers have found striking state and regional variations in placement rates for students with 

disabilities, which suggests that things like zip code may factor into placement decisions. For 

example, a study (conducted by Kurth) of students with autism found that states that have higher 

proportion of white citizens and lower poverty rates are more likely to have students placed in an 

inclusive setting when compared to states with more diversity. Ms. Swenson noted that it used to 

be true that about 80% of students with IEPs have only one speech or language goal on their IEP. 

She asked if there are newer data available. Dr. Quirk responded, “unfortunately no.” 

Dr. Quirk noted that lately emphasis has been placed on developing tiered systems of support 

(e.g., Positive Behavioral Interventions and Supports (PBIS), response to intervention, and 

systems that combine academics and behavior known as multi-tiered systems of support). In 

order to implement these types of systems, schools need to have benchmark data for reading, 

math, and behavior as well as formative assessments to monitor progress over time. Research 

shows that when students with reading disabilities get high-quality general education instruction 

plus intensive instruction in their reading needs, they improve more than when they have just one 

or the other. There is no research that shows when students are self-contained, they learn more. 

Some people may assume that a self-contained setting offers highly qualified instructors; there is 

no evidence to confirm this point. 

Dr. Quirk explained that there are five domains (each has two features) that the SWIFT Center is 

currently looking to build. These domains are: (1) administrative leadership, (2) multi-tiered 

system of support, (3) integrated educational framework, (4) family and community engagement, 

and (5) inclusive policy structure and practice. Ms. Gina Kline asked if there has been any 

research to evaluate the long-term cost efficiencies of mainstream education as well as the 

SWIFT model. Dr. Quirk responded that there has not been a cost evaluation in this work. Mr. 

Habib talked about the importance of having bold ideas. For example, one idea is to get rid of 

disability categories (i.e., no disability labels) and mainly take into account the support needs of 

an individual. Another idea is to phase out IDEA, and make it part of the ESSA in order to break 

the barriers and get rid of silos. Ms. Swenson expressed personal belief that IDEA is extremely 

clear about inclusive placement; and if that is not possible, one should make a placement 

decision at that point. This goes back to understanding of what segments of the general 

population use IDEA, and what are their various concerns on disability categories, zip codes, and 

other living circumstances.

10
Open-Forum Discussion

Workgroup Members, Data Analysis Team, Full Committee

Ms. Pugh asked if the “Dear Colleague” letter from the Department of Education can help update 

the current educational regulations. Dr. Quirk responded that the “Guidance Document” was 

very helpful. However, different interpretations of it can get in the way. Mr. Richard Davis 

pointed out the philosophy of the ecology of the classroom, which uses the universally designed 

classroom to solely respond to the support needs of students and not the differing disabilities. 

Mr. Thornton asked about the community involvement and strategies for inclusions of students. 

Dr. Quirk responded some of the critics of moving towards inclusion might be special education 

teachers and parents who are afraid of their children being hurt. It is important to have an active 

strategy developed in order to communicate with parents on a regular basis. Mr. Brian Parsons 

agreed and stated that higher education teacher preparation programs and communication 

assessments (on IEPs) are also important strategies. Mr. Strautmanis stated that this speaks to 

the importance of civic engagement that will be impactful—the access that the Committee has to 

its network, constituents, and other audiences can make an impact in this very important area. 

Focus Area # 3: Transition as a critical area for pathways to higher education and career 

development 

Data Analysis, Interpretation, and Presentation

Serena Lowe, PhD, ACL Senior Advisor 

Larissa Crossen, ACL-AIDD Program Specialist

Dr. Serena Lowe shared with the Committee that her presentation will focus on: a) explaining 

several existing federal policies on transition outcomes for youth with I/DD, b) highlighting the 

AoD-AIDD’s investments on this area, and c) sharing some of the accomplishments of the 

federal partners. She pointed out that many of the federal investments, in recent years, have been 

appropriated on school-to-work transition from the platform of employment first, which is the 

national movement that publicly finance services and support on competitive integrated 

employment. The “Employment First State Leadership Program” includes coordination, 

planning, and service delivery and outcome measurements to track the respective progress 

overtime. It requires methodical resource integration, which can be challenging in the Federallevel. The Department of Labor (DOL) is working around system change with the focus on 

successful school-to-work transition outcomes. The Pathways to Career Initiative is also 

conducting rigorous research in the area of transition. 

Ms. Crossen continued this presentation by explaining the role of AIDD and its investment in 

initiatives that focus on youths and successful transition to education and career development. 

As a part of the requirements, the AIDD has asked its grantees to develop innovative strategies to 

ensure knowledge transfer and management of best practices between the consortium and state 

systems on employment for workers with I/DD. She added that some other requirements 

focused on exploring ways to stimulate the array of service providers and maintaining 

competitive employment in integrative settings. AIDD also paid attention to developing a 

method in providing ongoing training and technical assistance to state systems and different 

provider agencies. 

11
Dr. Lowe stated that this year, the DOL will fund 19 core states that provide direct technical 

assistance and policy consulting. The Federal government rewards the good work of cross 

system team-building that is aimed to bring transition coordinators, teachers, vocational 

rehabilitation (VA) counselors, and I/DD case managers together to implement effective 

practices. The government also provides ongoing mentoring and professional coaching overtime 

so that as people are applying this work on a local-level, they receive supports needed to 

strengthen their work. The PROMISE Initiative, by far, is one of the biggest investments to 

bring federal partners together. The Pathways to Careers Initiative is another high profile 

project. With regards to the Workface Innovation and Opportunity Act (WIOA), the federal 

investments and commitment to youth and youth with disabilities create some opportunities 

along the way. According to Title I of the Act, local youth formula funds have to use at least 

20% on creating work experience for youths, including partnerships, job shadowing, summer and 

year-around employment. In addition, 15% of all VR funds have to be used for transition 

services including work-based learning experiences. 

Dr. Low continued her presentation by saying that with workforce development systems

(American Job Centers), 75% of local formula funds have to be focused on out-of-school youth 

up to age 24. There is also a major focus on performance, in WIOA, in measuring and 

evaluating process in both the VR and workforce investment systems. The WIOA will require a 

cooperative agreement between the state’s VR system and state Medicaid and I/DD agencies. 

Section 511 in Title IV of WIOA limits the conditions that individuals 24 or younger, through 

VR system, could be placed into a recommended and/or referred sub-minimum wage work. 

WIOA youth services is an opportunity for great partnerships and collaborations across the 

multiple systems. Additionally, the topics such as building and sustaining the capacity among 

direct support professional and effective practices; misunderstanding employers and holistic 

wrap-around services; and performing stakeholder engagement with fidelity are very important. 

Open-Forum Discussion

Workgroup Members, Data Analysis Team, Full Committee

Ms. Weintraub asked what would happen to the PROMISE grant after the five-year contract. Dr.

Corrine Weidenthal responded that the Department of Education will have a project review soon 

to take a look into the sustainability of this project. Ms. Pugh mentioned that there is a certain 

type of supplementary aid and services that support students before they would be deemed. She 

showed concerns about the lack of assistive technology evaluation to support individuals in 

every employment setting. Ms. Swenson pointed out that in 2015, Office of Special Education 

and Rehabilitative Services funded a $20 million grant to perform “Automatic Cloud 

Personalization” in order to build the infrastructure that allows technologies to operate by 

recognizing the individual’s accessibility needs.

Mr. Habib asked if there is any existing funding stream for reimbursement; specifically, for the 

person-centered planning. Dr. Low replied that the Home and Community-Based Services 

(HCBS) is the impetus to making sure that individuals receive supports in integrated settings and 

have maximum access to community living. There are states that in their waivers and state plan 

options pay for person-centered planning. Ms. Swenson and Mr. Blumenthal raised concerns 

that many states do not fully unitize their VR dollars, and return the remaining funds to the 

Federal government.

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Recapping the Day’s Discussions and Providing Guidance and Directions

Julie Petty, Chair

Aaron Bishop, Commissioner and DFO 

Chairwoman Petty announced that the Committee is scheduled to break into four small 

Workgroups on the second day of the meeting. This is being done to provide an opportunity to 

members to discuss their selected focus areas in small groups. Commissioner Bishop brought 

the meeting to an end by stating that the presentations, data, and open discussions helped frame 

the focus areas of the RTP. He added that the committee will follow the same guidelines as last 

year to prepare a timely RTP. This will happen before May 11, 2016, in which many of the 

current members are expected to exit out of the Committee. 

(Recess)

DAY TWO (February 23, 2016) 

Call to Order

Julie Ann Petty, PCPID Chair 

The PCPID February 23, 2016 Meeting was called to order by Chairwoman Petty. She stated 

that the Committee was scheduled to receive presentations on Self-Determination (SD) and 

Support Decision-Making (SDM) by the ACL staff.

Focus Area # 4: Self-Determination/Supported Decision-Making from early childhood 

throughout the individual’s lifespan

Data Analysis, Interpretation, and Presentation

Molly Burgdorf, ACL Senior Advisor

Ms. Molly Burgdorf started her presentation by highlighting the ACL’s mission and vision 

statement, which is around maximizing the independence of people with disabilities—a key 

point that relates to the SD and SDM. Furthermore, the vision of ACL takes into the account all 

people, regardless of their disabilities and age (referring to the DD Act and Older Americans 

Act) to live with dignity, make their own decisions, and participate fully in their respective 

communities. For instance, the Older Americans Act includes freedom, independence, and the 

free exercise of individual initiative in planning and managing one’s own life. The DD Act 

addresses SD and independence among many other areas. One other mandate under the ADA, 

administered by ACL, is Olmstead Decision and that is the integration of people with disabilities 

in their communities. The ACL currently houses NIDILRR and the Independent Living 

Administration (ILA), and funds the National Resource Center for Supported Decision-Making. 

Mr. Eric Weakly added that the ACL’s Center for Integrated Programs develops grants and 

agreements that are cross-disability (across aging, and physical and cognitive disabilities). This 

year, Syracuse University is working on a small qualitative study to determine how different 

individuals use SDM. The University also works in collaborations with the Quality Trust for 

Individuals with ID in Washington, D.C. 

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Ms. Burgdorf explained the technical definition of the SDM. The SDM is a “recognized

alternative to guardianship through which people with disabilities use friends, family members, 

and professionals to help them understand the situations and choices they face, so that they may 

make their own decisions without the need for guardians.” Ms. Burgdorf provided reasons for 

why SDM is important. The SDM protects and preserves individual rights; helps advance the 

best quality of life for individuals, and put tools in place so that individuals can be supported 

without burdensome legal measures. Ms. Burgdorf pointed out that the research on the topic of 

SDM is new. However, the body of research will be growing in the coming years as the results 

of research in this area show that people are healthier, more independent, more well-adjusted and

better able to recognize and resist abuse through the SDM. 

People who do not exercise self-determination (SD) feel helpless, hopeless, and are self-critical. 

Since research shows that SD is good for individual development, the current trends on 

guardianship look even more troubling. Guardianship is a state-by-state patchwork of law as 

there is not a federal guardianship statute. However, the number of guardianships issued these 

days is growing astronomically. The National Legal Resource Center, which is an Older 

American Act-funded resource for lawyers and other legal providers (e.g., adult protective 

services) has engaged on SDM and hosted several webinars so far. Additionally, the National 

Guardianship Association has issued a position statement, recommending SDM as one of the 

effective options. 

Ms. Burgdorf continued by saying that the SDM and SD are also growing in the HHS context. 

The CMS has encouraged the states to develop systems for HCBS that are supposed to be 

designed to respond to the changing needs of beneficiaries in maximizing their independence and 

self-direction. The guidance, issued by the Secretary of Health and Human Services, highlights 

standards on person-centered planning and self-direction in HCBS and specifically discusses

how to access the needed supports in a manner that is consistent with the person’s preferences to

achieve a better quality of life. 

Mr. Blumenthal asked the presenter: “as CMS encourages LTSS, including its waiver services

(and managed care), what can ACL do to reconcile some of the conflicting directions by the 

CMS.” Ms. Burgdorf responded that at this time, the ACL is engaged in a collaborative process 

with CMS to review the states transition planning. 

Mr. Holler expressed belief that the SDM does not only pertain to ID, but also to DD. Ms. 

Swenson educated the Committee on intricacies around the Article 12 of the CRPD, which talks 

about the legal capacity. Mr. Brandt asked if there are any data available on how many people 

have guardianship who also receive Medicaid or Medicare. Ms. Burgdorf responded that there is 

no 100% accurate picture of who has or who is under guardianship in the U.S. Mr. Strautmanis 

encouraged the Committee to urge Federal partners to get rid of the existing silos and work 

coherently in order to have positive outcomes and to empower individuals and families in 

guardianship and SDM processes. 

Dr. Spitalnik pointed out that one question about the SDM is: “what is the legal back up to it in 

terms of recognizing decisions that are being made.” She encouraged the Committee to not only 

recognize the SDM as a basic human right, but also as a civil right issue. Mr. Berns ask if there 

is a body of research that looks at SD within the context of guardianship. Ms. Burgdorf 

responded that some preliminary research on this topic might have been conducted this year. 

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Eric Weakly, ACL-CDAP, Aging Services Program Specialist

Mr. Eric Weakly began his session by talking about the “No Wrong Door,” in relations to 

person-centered planning and self-direction. He explained that from 2002 to 2004, the CMS and 

Administration on Aging work together to determine if there was local and statewide coverage 

for Aging Disability Resource Centers (ADRCs), and that people were getting connected to 

support and information systems. Currently, the No Wrong Door system is the first entry for 

constituents to find out about available services and support systems. Some options for ADRCs 

No Wrong Door project are the information, assistance, and counseling. 

Open-Forum Discussion

Workgroup Members, Data Analysis Team, Full Committee

Commissioner Bishop noted that a course in using tools for person-centered training was

recently developed. He mentioned the fact that CMS, through the HCBS rule, acknowledged 

person-centered planning from the DD community standpoint. Commissioner Bishop added that 

SDM is a place where this can be culminated and where all the stakeholders can work together to 

build a solution. Dr. Reynolds stated that this can also be about leading individuals into the 

direction of employment first, community first, and allowing them to plan for their day-to-day 

realities. 

Ms. Swenson expressed belief that there is a moral risk with person-centered planning where 

parents, families, siblings, schools, and service providers are being told that the world revolves 

around one person. “Whenever someone says this phrase—nothing about me without me— 

there is a response saying: Yes and just remember, not everything is about you.” Ms. Swenson 

added, this means that a mother also needs to be able to keep her job, a father deserves to take a 

vacation, a family needs to sleep overnight, etc. In one word, the person-centered planning may 

be the wormhole between the family and the formal system. 

Further Suggestions and Development of Draft Recommendations for 2016 Report to the 

President

Workgroups Sessions 

Full Committee Discussions

The PCPID Workgroups reconvened and hold a 30-minute discussion session for each of the 

focus area of the 2016 RTP. 

Meeting Adjournment

PCPID Chair

Chairwoman Petty made the motion to adjourn. Mr. Strautmanis and Ms. Weintraub seconded 

the motion. The meeting was adjourned.

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ACTION ITEMS:

PCPID Members

1. Submit travel expenses to the PCPID Program Assistant for reimbursement purposes five 

business days after the meeting. (Completed) 

2. Complete the meeting “Evaluation Survey” by Thursday, March 10, 2016. (Completed) 

PCPID Staff

1. Convert the meeting recordings into minutes by Friday, April 1, 2016. (Completed) 

2. Continue convening the Workgroup discussion sessions and solicit input and feedback 

from all PCPID members by Friday, April 1, 2016. (Completed) 

3. Schedule the next meeting of the Committee by Friday, April 1, 2016. (Completed) 

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