PCPID Meeting: February 19–20, 2015
Ex officio Members and Representatives
Jennifer Eichhorn for Mark Gross
Representing the Honorable Eric H. Holder, Attorney General, U.S. Department of Justice
Laura Tronge for Susan J. Aramaki
Representing the Honorable Penny Pritzker, Secretary, U.S. Department of Commerce
Janet Voight for Serena Lowe
Representing the Honorable Thomas E. Perez, Secretary, U.S. Department of Labor
Sue Swenson (Acting Assistant Secretary)
Representing the Honorable Arne Duncan, Secretary, U.S. Department of Education
Margaret Schaefer for Brian Parsons
Representing the Honorable Jeh Johnson, Secretary, U.S. Department of Homeland Security
Representing the Honorable Wendy Spencer, Chief Executive Officer,
Corporation for National and Community Services
Patricia Nobbie for Sharon Lewis
Representing the Honorable Sylvia Burwell, Secretary, U.S. Department of Health and Human Services
Representing the Honorable Julian Castro, Secretary, U.S. Department of Housing and Urban Development
Representing the Honorable Anthony Foxx, Secretary, U.S. Department of Transportation
Leola Brooks (via telephone)
Representing the Honorable Carolyn W. Colvin, Acting Commissioner, U.S.
Social Security Administration
Mary Kay Mauren
Representing the Honorable Jacqueline A. Berrien, Chair, Equal Employment
Representing the Honorable Jeff Rosen, Chair of the Board, National
Council on Disability
Julie Ann Petty, Chair
Jack Martin Brandt
Zachary W. Holler
Lisa M. Pugh
Deborah M. Spitalnik, PhD (via telephone)
Michael Strautmanis (via telephone)
Ricardo T. Thornton, Sr.
Sheryl White-Scott, M.D.
Daniel K. Davies
Founder and President
AbleLink Technologies, Inc.
Colorado Springs, Colorado
Rick Rader, MD, FAAIDD
Director of Habilitation Center
Orange Grove Center Chattanooga, Tennessee
Abe Rafi, Director
The Arc of the Unites State, Washington, D.C.
David O’Hara, PhD
Chief Executive Officer
Westchester Institute for Human Development Valhalla, New York
The Administration on Intellectual and Developmental Disabilities (AIDD)-PCPID Staff
AIDD Commissioner and PCPID DFO
Madjid “MJ” Karimi, PhD
PCPID Team Lead
PCPID Program Assistant
Day One, February 19, 2015
Greetings, Call to Order, and Introduction of PCPID Chair
Aaron Bishop, AIDD Commissioner and Designated Federal Official (DFO)
The February 19-20, 2015 meeting of the President’s Committee for People with Intellectual Disabilities was called to order by Mr. Aaron Bishop, Commissioner of the Administration on Intellectual and Developmental Disabilities and PCPID Designated Federal Official. He welcomed meeting participants and thanked them for their patience through rescheduling of the January 2015 meeting, and their current participation regardless of the severe weather conditions in Washington, D.C. Commissioner Bishop reviewed the meeting agenda and highlighted issues to be discussed regarding the theme of the PCPID 2015 Report to the President (RTP): Technology for People with Intellectual and Developmental Disabilities (I/DD). He, then, turned the meeting over to the PCPID Chair, Ms. Julie Petty.
Opening Remarks and Introduction of Special Guests
Julie Petty, PCPID Chair
The PCPID Chair, Ms. Julie Petty, thanked the PCPID staff for their efforts to reschedule the meeting, as it was cancelled due to inclement weather in January. She also thanked participants, including meeting presenters, for traveling in the cold February weather to participate and present in the meeting. Ms. Petty acknowledged the presence of invited guest speakers: Dr. Rick Rader, Dr. David O’Hara, Mr. Dan Davies and Mr. Abe Rafi.
Aprroval of Agenda and Minutes
Julie Petty, PCPID Chair
Chairwoman Petty requested a motion to approve the minutes of September 3-5, 2014 Committee Meeting. Susana Ramirez made the motion to approve the minutes and Liz Weintraub seconded the motion. The Committee voted, unanimously, to accept the minutes of the September 3-5, 2014 Meeting.
The PCPID Chairwoman also requested a motion to approve the February 19-20, 2015 Meeting Agenda. Mr. Peter Berns made the motion and Mr. Jack Brandt seconded this motion. The Committee voted, unanimously, to accept the meeting agenda.
Self-Introductions (New Citizen and Ex officio Members)
Chairwoman Petty requested that the newest citizen member to PCPID, Michael Strautmanis, introduce himself, including description of his background in the field of I/DD and his current work. Mr. Strautmanis stated that he is working in “citizenship,” which is philanthropy and corporate social responsibility at the Walt Disney Company. Prior to this position, he served at the White House as a Deputy Assistant to the President. In that capacity, Mr. Strautmanis was involved in policy issues affecting people with a wide range of disabilities, including I/DD that has been close to his heart due to the diagnosis of a family member.
The PCPID Chairwoman asked the Committee members whose participation was via phone to state their names. Dr. Deborah Spitalnik, Ms. Margaret Schaefer, Ms. Stacey Milbern, Dr. Sheryl White-Scott, and Ms. Susan Axelrod identified themselves.
Ms. Patricia Nobbie, a Project Specialist at the Administration for Community Living (ACL), shared with the members that she was representing the Department of Health and Human Services on behalf of Ms. Sharon Lewis. Other members around the table stated their names and affiliations with the PCPID.
Commissioner Bishop stated that Dr. MJ Karimi, PCPID Team Lead, is venturing out into the world of Twitter and will tweet the presentations of the day to the public. He added that this information could be incorporated into the 2015 RTP to encourage the use of technology and also for the public to realize that their comments are taken seriously and will put to use.
Chairwoman Petty mentioned that the Committee would hear from four presenters scheduled to discuss different aspects of technology. She reminded members that they have received the “Introduction” section of the PCPID 2015 RTP, in an effort to start the Committee’s discussions in the area of technology and new innovations that are being developed. The PCPID Chairwoman added that Ms. Susana Ramirez and Ms. Stacey Milbern, in cooperation with Dr. Karimi, have been preparing the “Vision” section of the RTP. She encouraged members to think about developing at least three recommendations in the areas of education, poverty, and health disparities rather than a bucket list of general recommendations to be used in the RTP.
Commissioner Bishop stated that the Committee’s goal is to have the report “finalized” by May 2015, since a few members are scheduled to exit the Committee on May 11th. This deadline will allow current members of the Committee enough time to cast their voting ballots on the approval of the 2015 RTP. Commissioner Bishop added that the meeting presenters would provide the basis for “thorough discussions about potential recommendations in the report during the course of this two-day meeting.” He also expressed belief that the Introduction section may offer valuable information to allow members to come up with recommendations revolving around new technologies, as the vision section may complement points decided in the PCPID’s report framework that was discussed during the last meeting.
Chairwoman Petty asked members to provide comments on the Introduction section of the RTP. Ms. Lisa Pugh expressed belief that the Introduction section was very comprehensive and appeared to be too long. She suggested use of some of the information from the Introduction section, but for the most part to set it aside. Ms. Liz Weintraub thanked the PCPID staff for preparing the comprehensive Introduction that captures all the areas discussed in the September 2015 Meetings. She added that some of the wording in the section needs to be accessible/comprehensible to people with I/DD. Dr. Deborah Spitalnik agreed with this observation and added that the Introduction should have also addressed the technology recommendations. Ms. Yvette Rivera asked if it is reasonable to provide the Report in multiple languages rather than, solely, in English. Chairwoman Petty responded that it might sound reasonable and added that this could also be accomplished by a video clip exclusively targeting self-advocates.
Ms. Susana Ramirez and Ms. Sheli Reynolds suggested starting the Report with recommendations that are succinct. They expressed belief that some of the information in the draft Introduction could be easily used in the final Report. Chairwoman Petty asked if the Committee needed to keep all the background information in the current Introduction section. Sheli responded that the Committee should identify what the recommendations are first, and then use historical information to back it up. Mr. Dan Habib added that it would be helpful to differentiate between the Executive Summary and the Introduction sections. He noted that “what most readers will read in the Report might be the Executive Summary, which must be very clear and short.” Mr. Habib suggested that the Executive Summary should also state the problems first and then suggest specific recommendations. He stated that there is still a potential to have an Introduction section that provides more context to the readers. Mr. Habib further suggested a strength-based approach to the focus areas of the 2015 RTP. This is, for example, to address poverty through employment and/or community living. Chairwoman Petty agreed and asked him to come up with a few suggested focus areas. Mr. Habib responded that the new focus areas could be education; employment; healthcare; and community living. Ms. Reynolds added that it is important for the Committee to research how the federal government is currently addressing issues related to Long-Term Services and Support (LTSS) as well. Mr. Peter Berns stated that the employment is not the flipside of poverty, because most people with disabilities, who are employed, are still living in poverty. He added that the Report should look at the important role of technology in addressing the poverty among individuals with disabilities.
Mr. Habib encouraged the Committee to take a look at education, healthcare, community living, employment and poverty through the lens of technology. He expressed belief that the question should be: how could technology support people with I/DD to be included in education; access healthcare, live in the community, and stay out of poverty? Chairwoman Petty responded that these are all new suggested focus areas, which will constitute a new framework and need to go through a voting process, again. Commissioner Bishop continued this point by saying that the Committee can choose to have a deeper dive on employment and LTSS issues; however, additional briefings and presentations by the experts in these areas may be required to accomplish a more intense explanation of these issues. Ms. Reynolds said that members may have a better idea on how to formulate and organize different sections once they get the chance to hear from all the presenters. Everyone agreed.
Ms. Stacey Milbern shared with the Committee that while working on the Vision section of the RTP, she was concerned about the five different areas within the section that members agreed on in the last meeting. She expressed concerned that this could have made the report even longer and more comprehensive. Ms. Pugh agreed and built off Stacey’s comment that given the timeframe and the purpose of the 2015 RTP, the Committee should consider developing recommendations that the current Administration can take into consideration and implement.
Mr. Micah Fialka-Feldman asked the Chairwoman or the Commissioner to break down this information. Commissioner Bishop responded that the Committee is going to pause on the Introduction, noting “that it is a good start with great information in it though.” It may be good to step back to see what recommendations are developed so that the Committee can then tailor the Introduction to express those recommendations with a short and precise Executive Summary.
Chairwoman Petty asked Ms. Susana Ramirez, Ms. Stacey Milbern, and Dr. Karimi to provide a briefing to the Committee regarding their progress toward writing the Vision section of the RTP. Ms. Milbern started by saying that at the last PCPID meeting, the Committee decided to include five different areas (value, self-advocacy, family and community, and public/private partnerships, and policy) in this section. She added that their small workgroup talked about technology being a bridge to integrate these areas and being a trade standard, but not being disability-specific. She stated that people with disability can use technology to advance their lives, combat isolation and loneliness, and increase their independence and dignity. Ms. Ramirez and Dr. Karimi expressed belief that all of the aforementioned areas needed to take into account the perspectives of self-advocates and families. So, the recommendations in the Vision section should focus on values, self-advocacy and family, and include the community portion and policy within each of the other parts.
Ms. Milbern stated that, for the self-advocacy section, the workgroup decided to discuss a broad vision on how technology makes independence and self-determination possible for people with disabilities. The group also talked about increased community participation, safety, transportation and employment through the lens of technology. The group further discussed the topics of poverty and lack of access to technology as well as the aging family members in the rural areas of the country. Group members discussed the importance of technology in time management and daily-life education (e.g., cooking videos, etc.). Ms. Milbern reiterated that the Vision section of the RTP should encompass how self-advocates and family members use technology and briefly discuss public/private partnerships or the policy aspect of using technology. Ms. Liz Weintraub and Ms. Betty Williams agreed and restated that many self-advocate are aging themselves.
Ms. Reynolds thanked the group for their briefing and encouraged the members to be patient in the organization of the 2015 RTP, until all the presenters get the chance to present before the full Committee. She added that no matter what type of role ones play in the lives of an individual with disability, “we want all people have access to technology.” Ms. Pugh agreed and added that the Committee so far talked about the Introduction, Executive Summary, Vision and Recommendations, so each piece plays an important role in the Report. Mr. Peter Berns expressed belief that previously the Committee decided to have a concise statement of what is the vision for people with I/DD in the community and their lives—an aspiration for type of lives—and further considerations of how technology can help achieve this vision. He encouraged the members to get some clarity around what type of message the Committee tries to communicate in the vision section. Mr. Jack Brandt responded that the message is that people with I/DD should not be left out of the conversation on technology developments. He asked “when businesses plan and when federal agencies plan for updating their systems, where do people with I/DD fall in?” Ms. Pugh stated that the Vision also should convey what is the definition of a meaningful life.
Mr. Gary Blumenthal shared with the Committee that one of the things that President Richard Nixon asked this Committee to do, through an Executive Order, was to establish projected dates that the recommendations should be implemented. He suggested that the Committee members indicate what type of technological changes they want to see by 2020 through timetables in which the success could be measured. Ms. Reynolds noted that the Committee should also talk about how technology is a fabric of everyday life, and is really helping people in all aspects of their lives—“it is not an add-on thing.” Mr. Strautmanis added that the Committee needs to address where the society is going with new innovations in this niche marketplace rather than where it is simply going. Mr. Habib said that, although the technology is a means to an end, it is not an end in itself. He added that the Committee should address the goal of the Report (should be decided in this meeting) and include that in the Introduction section. Mr. Ricardo Thornton responded that reaching out to youth that may be advocates in the future could be one of the goals of the Report.
Commissioner Bishop called the meeting to order after a short recess. He thanked Committee members and staff for the time spent on preparing the Introduction and outline of the Vision sections of the 2015 RTP, and expressed belief that these sections truly motivated the Committee to think about what the Report on technology should look like. Chairwoman Petty encouraged members to explore all the possibilities for people with I/DD as they listen to presentations by experts in the field of Technology. Commissioner Bishop announced that, because of conflicts in the flight schedules, two of the presenters are asked to swap the time of their presentations.
Health Disparities and Technology (Medically Underserved Patient)
Rick Rader, MD, FAAIDD
Director of Habilitation Center, Orange Grove Center
Ms. Lisa Pugh welcomed and introduced the first guest speaker, Dr. Rick Rader.
Dr. Rader started by saying that the heart of his presentation would be the proposal for the PCPID to consider presenting in the Report the wisdom of the designation of medically underserved population (MUP) status which, presently it is not available. He quoted Dr. Martin Luther King, Jr. that “of all the forms of inequality, injustice in health care is the most shocking and inhumane.” He added that when thinking about the landscape when Dr. King said this, there were pressing issues of disparities, not only in healthcare, but also in education, voting rights, transportation, housing, employment, religion, justice, etc. But Dr. King picked inequality in healthcare as the most shocking and inhumane.
Dr. Rader provided a robust history in both government and private sectors that address the healthcare needs of medically underserved populations. He spoke of initiatives by the Visiting Nurse Services of New York in 1800s where populations were dealing with diseases like tuberculosis, pneumonia, and dysentery in 1900s. Dr. Rader added that President John F. Kennedy realized that healthcare had to be the cornerstone for policies and programs to be undertaken by what this motivated Committee’s establishment. Emergence of the developmental model of healthcare came from the first Chair of the President’s Committee, Dr. Robert Cooke, who realized that people with I/DD needed healthcare in order to benefit from developmental programs and policies.
Federal healthcare programs for the underserved came about in the 1960s from the war on poverty. Despite many reports, surveys, research from the Institute of Medicine (IOM), and from the Centers for Disease Control and Prevention (CDC), and Agency for Healthcare Research and Quality (AHRQ) on medically underserved populations, the federal government never officially declared people with intellectual disabilities (ID) as being medically underserved.
As a suggested policy, medical school loans should be forgiven for students that choose to serve people with I/DD. It is not unusual for graduates of medical schools to incur huge debt and spent years in residency. If they elect to work in the area of I/DD and provide services to MUPs, their loan should be reduced or forgiven. This policy should also allow international medical graduates an immigration status if they choose to work in this particular area. Ten medical schools were added in the United State in the last 12 years, but the number of residency spots has remained flat. For instance, there is law in the state of Missouri that recognizes medical school graduates who have not matched in residency programs and allow them to provide services to individuals with ID. The MUP designation would give healthcare professionals the impetus to include them in the curriculums. The MUP designation would also put pressure on healthcare professionals to do a better job in screening and disease prevention of individuals with I/DD (e.g., mammography, health screening, stress testing, diabetes training, HIV, STDs). Regrettably, current medical research does not include people with I/DD for a host of reasons, including the ethics of informed consent, but medically underserved individuals should be able to freely participate in medical research as more research dollars should be devoted to them. Another issue is that none of the drugs currently used were tested on individuals with cerebral palsy or Down syndrome.
The question is: Who creates the medically underserved population status? Since 1970s, the Health Resources and Services Administration (HRSA) has been using four variables, leading to a mathematical formula that determines eligibility. The poverty level (weighted value 100% below the poverty-level) is one of the eligibility criteria. There is belief that 85% of all practicing physicians should be able to handle 85% of all individuals with I/DD. Regrettably, there are no board certified adult developmental disabilities physicians in the United States. There is a host of political, economic, social stigmatizing reasons for why there has not been designation of the MUPs.
In 2002, Surgeon General, Dr. David Satcher, developed the closing gap report which was the blueprint for addressing the health disparities of people with I/DD. At that time, the report identified people with I/DD as being medically underserved and suggested six recommendations, including healthcare and allied healthcare trainings. In the 800 questions by the 2014 Family Practice Board, there was no question regarding people with I/DD at all. The Internal Medicine Board did not ask one question in their questionnaire regarding individuals with I/DD. This was despite the goal of Healthy People 2010 which also called for healthcare equalities for people with I/DD.
The second Surgeon General, Dr. Richard Carmona, developed a call to action/report addressing the healthcare needs of people with disabilities. In 2009, the National Council on Disability (NCD) had a 450-page report with 600 references which recognized and announced people with I/DD as being medically underserved. The Association for Clinicians for the Underserved, American Association on Health and Disability, and Special Olympics’ Health Athletes Program all came to realize that people with I/DD are medically underserved.
The American Academy of Developmental Medicine and Dentistry was created at the suggestion of Surgeon General Satcher, and is the only bicameral organization to recognize the needs of people with I/DD for oral health care. The Curriculum Assessment of Needs (CAN) project was a survey of all deans of medical schools and their students in the United States as it found that 97% of students were not receiving any didactic hands-on training and they desired to have. The American Medical Association (AMA), within the last two years, has come out with a resolution suggesting that people with I/DD become designated by the federal government as being a medically underserved population; and this has been passed by the AMA. The American College of Physicians/Internal Medicine will vote in April 2015, at their National Congress meeting to designated individuals with ID as being underserved, and will encourage medical schools and graduate medical education programs to include developmental and disability-related competencies and objectives in their curriculum.
In 2007, the definitive textbook on the medical management of underserved populations was published. This document is comprised of 450-page, half a million words, and 44 chapters, with 77 contributors; and yet, not one word about individuals with I/DD. For this reason, Dr. Rader decided to read the book reviews by the New England Journal of Medicine. He learned that not many students were paying attention to this book. This can serve as justification for suggesting that MUP and designated person be promoted by the PCPID.
The impact of health information technology and disparities, and a whole array of innovations designed to help individuals with I/DD (everything from biomaterial clothing that can project biometrical readings to radio frequency identification chips that can be implemented into the triceps muscles) can provide information and educational insight to medical professionals or physicians who are not familiar with I/DD population. The six aims for improving the healthcare by the IOM are: safety, patient centeredness, efficiency, equality, timeliness and effectiveness. There is an information technology (IT) device, IT program, and IT platform that addresses each of these six aims for improvements with telehealth, case management, healthcare delivery, and patient engagement.
In closing, Dr. Rader raised the topic of Paradox of Technology. He described that, currently, the physicians’ average time to see their patients is 12 minutes. When physicians start using the electronic health records (EHRs) that only require eight clicks to change a medication, this will become an undaunted process. Hopefully this will help with chronic disease management which is a problem accounting for the bulk of healthcare expenditures in the field of Disability.
Dr. Sheryl White-Scott asked Dr. Rader how technology could be used to help address health disparities. Dr. Rader responded that in the field of IT, one thing that could have the potential is physician prompts. When a physician encounters an individual, there are questions to think about: Is this part of the disease or disorder; is this a consequence of the disorder, or has nothing to do with it? So, as we look at the Affordable Care Act (ACA) and its requiring of EHRs, there may be a way to fit that in some of the underlying prompts, technology that could be used to ensure individuals with I/DD have access to care.
Mr. Blumenthal asked what PCPID should do in order to widen its audiences and educate the policymakers as well. Dr. Rader responded that we must have insurance companies understand this population. Mr. Berns shared with the members that he received an e-mail, yesterday, about the idea of MUP designation published in the American Journal of Public Health by Gloria Krahn and her colleagues which, at one point, was suggested in the HHS action plan with no success. Dr. Rader responded that, when the case was made to HRSA, people with I/DD qualify for the MUP designation, “big D” (the larger body of disabilities) wanted that designation too and this derailed the prominence and advancing on that idea.
Mr. Habib asked if Health Insurance Portability and Accountability Act (HIPPA) is a restriction on the use of communication technologies with the healthcare practitioners. Dr. Rader responded that he could not identify any specific hurdles with the HIPAA that PCPID could help address on preventing kind of ease of communication through technology.
The Rights of People with Intellectual and Developmental Disabilities to Technology
Daniel K. Davies, Founder and President, AbleLink Technologies, Inc.
Mr. Dan Habib welcomed and introduced the next guest speaker, Mr. Daniel K. Davies.
Mr. Davies noted that he would talk about cognitive technologies, and reiterated that the word “technology” means so many things. He reaffirmed to members that he would discuss technologies used specifically by individuals with I/DD to live self-determined lives and participate fully in educational opportunities and employment that will change their lives for better.
Mr. Davies showed a video of an individual with ID at his organization and stated that AbleLink Technologies involves individuals with I/DD in the development of technologies because they know better than anyone else what their needs are. He added that one cannot really participate fully in the society without interacting with technology in various ways, whether it is at the airport, grocery store, using the ATM machines, or going to movies. Mr. Davies explained that the simple definition of technology is “the application of scientific advances to benefit humanity.” So, why is it so difficult to use technology, then? This is because as the functionality of new technology increases, the ease of use goes down (the paradox of technology).
Mr. Davies explained that mainstream technology has not been designed with the needs of people with cognitive disabilities in mind. Easier features have not, therefore, been built into the new technologies. One area that can be discussed is the work of the Coleman Institute and other organizations that have been participating with this Institute to promote the rights of people with cognitive disabilities to technology and information access. Since last year, many organizations, including Microsoft, Apple, Google and others, have endorsed the Coleman Institute’s declaration of rights of people with cognitive disabilities to technology and information access.
When cognitive design approaches are used in the development of both mainstream and specialized technologies, they could be easily used by people with cognitive disabilities as well. Mr. Davies explained that, cognitive technology eliminates the need for someone else to help with any life activity on which one is focusing. The everyday technologies are the things that an individual needs to do (scheduling appointments, remembering appointments, e-mailing messages, etc.). The specialized technologies, however, are designed to meet the special needs of people with cognitive disabilities (e.g., the scheduler that is built in an iPad is very text-focused).
Mr. Davies played a video clip of a scheduler that illustrates pictures and can speak to an individual. The person can hear an audio tone and the whole screen will say “It’s Time” or “You have a message, touch the screen here.” The person touches the screen and hears “It’s time to get ready to catch your bus,” or whatever it might be, with pictures. Another example, illustrated by Mr. Davies, was a Windows Desktop with lots of little icons on it, which at times can get very confusing. But, it can be replaced with a desktop that is more personalized, that has large buttons that can talk, and pictures that actually mean something. For example, when one touches the button, it will say “Here is the video about the space shuttle that I like.”
Facebook is another example. Mr. Davies played a video that showed a program that is designed to make Facebook more user-friendly, and can eliminate many of the cognitive complexities. In the video, a young lady touched a green button when checking her Facebook account, the post from one of her friends was read to her immediately. In return, she sent a post to her friend which was basically her recorded voice message.
In addition to the aforementioned technologies being used by the individuals with cognitive disabilities, many service providers and agencies have also started utilizing them. Mr. Davies used two examples of technologies that are being used by agencies to manage a different and stressful situation faced by their employees (e.g., loss of a family member) and using e-mail through pictures and voice recording technology. Mr. Davies continued his presentation by providing example of specialized technologies (used to help augment the needs of people with I/DD at home or workplace, etc.). Using iPad, Tablet and Android devices, an individual can record his/her voice for the steps in accomplishing any task step-by-step (e.g., time to take your own blood pressure and how to do that step-by-step). Ability Beyond, a Connecticut-based organization is using this technology to provide instruction to its employees with disabilities to arrange flowers. Another example is the Digital Storyteller designed for individuals with disabilities who cannot (or do not want to) use a keyboard. The individual can touch a picture on the computer and tell a story about each picture. The software will create a storybook and play it like a short movie with the selected picture and recorded voice. The WayFinder (The Arc of Albuquerque or ARCA) is also a specialized technology with a Global Positioning System (GPS) designed for people with cognitive disabilities to rely on paratransit and take public transportation, independently. Infused in many of these examples, there is a Cloud-based technology that can make all of these technologies work effectively.
Mr. Davies summarized his presentation by highlighting the following four areas: 1) recognition of the rights of individuals with cognitive disabilities (The Coleman Institute); 2) continued research and development funding for development, and in particular, longitudinal studies of technological innovations for individuals with cognitive disabilities, 3) funding obstacles in providing cognitive technologies (e.g., funding things like augmented communication devices), and 4) education and awareness regarding the impacts that cognitive technologies can have for people with cognitive disabilities.
Mr. Blumenthal suggested that the Committee meet with the Centers for Medicare and Medicaid Services (CMS) to work on the concept of Community Living, since the CMS recently issued a final rule on community and community-based services and the funding/supports that are available. He expressed belief that the definition of community is always evolving. The CMS should recognize access to technology as an integral part of what it means to be part of the community, home and community-based services (HCBS), the HCBS funding, which eventually will open some doors to the legislative barriers. Mr. Jack Brandt asked the presenter about the usage-rate of people with I/DD currently using various technologies. Mr. Davies responded that the usage rate is very low because these technologies are new.
Ms. Pugh asked Mr. Davies if there were any principles on how to include people with I/DD in the design of technologies. She also inquired regarding how he describes the potential cost savings (cost-effectiveness) when it comes to LTSS. Mr. Davies responded that customizability is a tenet of universal design that goes into the design of cognitive technologies and include people with I/DD in the design. He added that the Arc of Albuquerque has published a white paper that summarizes their smart travel projects, and that the agency was able to show some cost savings in this area of technology.
Accessibility, New Technologies and Polices
Abe Rafi, Director, Digital Literacy, The Arc of the United States
Ms. Liz Weintraub welcomed and introduced the third guest speaker, Mr. Abe Rafi.
Mr. Rafi began by noting that the information he would be presenting comes from 120,000 staff working at 670 chapters at the Arc of the United States that serve one million individuals with I/DD and about five million families, friends and advocates. He heighted three trends: 1) people with I/DD are increasingly using the new technologies; 2) people with I/DD increasingly seeking help from agencies that serve them to learn these technologies; and 3) people with I/DD increasingly expecting technology-powered services in all areas of their lives.
In the 1980s-1990s, computer hardware was not intuitive to use, whereas today touch screens provide immediate feedback to the user (e.g., the speech commands to help user to navigate and complete a task). Today, there is computing technology out there that requires even less interaction. The wearables, like the FitBit, capture the data your body is generating 24/7 and that data can go to your supporters or to artificial intelligence in the cloud. On top of the GPS app that helps people with their transportation needs; Smart home technology can also help people to take care of their houses (e.g., fire in the kitchen, water leak, etc.). Many schools are helping students through the use of technology in their individualized education plan to transition into independent living.
People often have a hard time navigating around new technological devices, because technology is rapidly changing. For this reason, the Arc of the United States has developed an online space called “Tech ToolBox.” It is accessible through ToolBox.BR.Org and helps people to find tech tools and products (i.e., hardware, software, and websites) that are known to be effective to help individuals with I/DD. One of the uses of the ToolBox, for example, is to help people find devices and applications that are useful for operating a computer, job-related issues, healthcare, and independent living. The idea is to create a magnet for developers or a bazaar for the products that are made accessible for people with I/DD. This includes the ability of users to provide product review. Another example is a product called Dragon Naturally Speaking, a device that anyone can use if they wish to speak into their computer rather than typing the words.
With regards to the third trend (people with I/DD increasingly expecting technology-powered services in all areas of their lives), the Arc of the United States is working with start-up companies that develop wearables. There is a wearable that individuals can put around their wrists to a detect seizure that otherwise may go unreported. The Arc is also working with large online job listings service agencies to help design an interface to provide job coaching to workers with I/DD. With regards to living in the community, some communities are developing databases to show the needs of person with I/DD in their families to first respondents (e.g., in the case of fire, a 911 emergency situations or even with respect to the criminal justice system).
Mr. Rafi explained that there is a rule by the CMS that not only denies funding for devices that can be used to generate speech, but also for the use of WiFi, Bluetooth, iGaze, and internet access. He added that this can be an area that PCPID should focus on in term of recommending a change. Another area of recommendation is related to assistive technology. Every state has an assistive technology center that is required to provide information, and assess and evaluate the situation. The problem is the difficulty to navigate around these state-wide systems. There should be a policy in place that requires states to report back to the federal government how user-friendly their systems are. In essence, the government should be the force behind creating standards and best practices to improve technologies to adapt to products that serve people with I/DD, Mr. Rafi concluded.
Commissioner Bishop asked Mr. Rafi how information from the United States Access Board and Architectural Barrier statute could be served to equip access to information technologies for people with I/DD. Mr. Rafi responded that he is not sure, but a statute that requires agencies to abide by can be helpful—“the only way to keep up with the accelerating technologies is to start creating them.” He added that the idea of living in the community is literally changing and it is about digital community now. Commissioner Bishop thanked Mr. Rafi for his response and asked how the Committee could take the information and the skillset that youth have today and help drive the federal policies around it. Commissioner Bishop also raised concerned about the lag time between research and development as well as the knowledge translation/research practice. Mr. Davies responded that social media technologies can play an effective role to shorten this lag time. He added, for example, any sophisticated online application (e.g., eBay, Orbitz, Google or Expedia, etc.) does constant research every second on all its users, and it also runs multiple experiments every hour. Mr. Habib expressed belief that one thing that the Committee can do is encourage the design of technology so that, from the beginning, it is designed for all people, including people with I/DD. There should be ways for the Committee to help companies and to incentivize them to always think about the needs of people with I/DD in the design of everyday platforms.
Mr. Habib asked the Committee if the American with Disabilities Act (ADA) regulates or mandates certain accessibility within technology. Mr. Berns responded that the ADA applies as we have seen litigations involving people with visual and hearing impairments, but there is yet to be a legal precedent applying the ADA in the context of cognitive disabilities. This is something that the Arc is exploring. Mr. Habib agreed and added that the “blind and deaf” communities have been proactive about brining lawsuits around technology, but this has not been the case for the “I/DD community.” Commissioner Bishop stated that he believes, for federal agencies, this lies under Section 508 of the Rehabilitation Act.
Innovative Information, Communication, and Social Networking Technologies to Promote the Participation of Individuals with I/DD and their Families and to Address Critical Heath, Developmental, and Family Support Issues
David O’Hara, PhD, CEO, Westchester Institute for Human Development
Ms. Sheli Reynolds welcomed and introduced the last guest speaker, Dr. David O’Hara.
Dr. O’Hara started his presentation by stating that he was asked to also talk about innovative technologies that allow people with ID to fully participate in the healthcare experience and design. The request included discussions of the future of healthcare delivery, and use of EHRs to perform better healthcare access, and developments of models of care that focus on a patient-centered medical hallmark. Dr. O’Hara shared that he is one of 12 fellows that are part of the Office of the National Coordinator, tasked to research the future of health information technology. He added that a challenge around designing the technologies to provide opportunities for people with ID to fully enjoy their lives, get feedback on how the structures serve, and experience self-direction is to keep the technological applications as simple as possible. For example, one of the things recently being done is the establishment of patient portal to over 1,700 individuals with ID and ensuring that the portals are tied to individual issues on the healthcare, the health care delivery and outcomes. Dr. O’Hara illustrated an example of a specific technology that has the ability to prompt, coach, and then offer ways to achieve particular health goals or outcomes to an individual with ID (e.g., check heart rate, check weight, monitor blood pressure, etc.).
Dr. O’Hara believes that as an administrator, one other thing to develop is a “survey” that is readily accessible for individuals to respond and share their experiences with you. He looked at the patient experience survey conducted by the AHRQ and turned the pen and paper survey to a voice delivered survey. As a surveyor, he wanted to ensure meeting federal standards of a patient-centered medical home. This type of survey normally includes question like: how long did you have to wait for an appointment? Could you get an after-hours appointment? Could you get an appointment when you wanted it? In the National Health Services (the United Kingdom), they followed the same format, but added another simple question: Would you recommend this health care provider to your family and friends? This survey was also based on the ATLAS survey model that uses smart devices to collect the data, which is accessible and may lead to quality improvement overtime. Dr. O’Hara stated that most healthcare management techniques around people with multiple chronic health conditions are through extremeness for specific health status like Type 2 diabetes, a lifestyle modifier, change lifestyle, and with coaching the prevalence of these condition will go down.
Dr. O’Hara further discussed the use of multimedia to create different strategies for developing person-centered plans across many areas of life. He played a video clip of people using multimedia and other inexpensive technologies, in the U.K., to create personal webpages using Google platforms, Google Chrome books, Google iDrive, to plan their own healthcare delivery and access to services. The Rix Centre has taken this technology to the Special Olympics in Europe and showed how this technology can allow an athlete to communicate with other athletes. Dr. O’Hara displayed the use of entire technology to the audiences through a short video clip.
Dr. O’Hara, then, explained the National Health Services survey that involved more visual presentations, accompanying each question. The surveyors wanted to provide opportunity for respondents to give free-form responses. In this model, the surveyors anticipated using the survey as a quality improvement tool specific to individual clinic environment, with different versions. He added that people with ID were very much a part of modification of the questions in the survey; they helped develop the questions, evaluate the success of the videos, and prepare the animations.
Dr. O’Hara talked about a particular application, based on some work that was funded by the ACL-AIDD, designed to study people with long-term chronic health conditions, and put together multi-session workshops to give them an opportunity to start defining what they would like to do in their lives, and what barriers they had encountered so far. Additionally, in the patient education development model, tools that could be made available through the patient portal model as well as the educational video clips were put into interface, developed into an individual’s personal smart device to provide coaching to the person. He added that “we cannot do much about health literacy, but can change health behaviors this way.”
In the United Kingdom, a piece of legislation for the individual education planning process has been adopted, which requires a planning process for special education purposes to go from birth through age 25, and a continuous process that involves the growth of a youngster until they effectively transition into a successful adult life. Soon, the Rix Centre will bring a technology to the U.S. to develop a wiki strategy, a personal website strategy for making the person-centered planning process possible and observe the individuals’ growth overtime. Dr. O’Hara encouraged the Committee to consider the possibilities from social media when preparing the Recommendation section of the RTP.
Ms. Reynolds added that the state of Ohio is currently rolling out a big project called “imagine” to figure out a way to meet state’s requirements on what needs to be documented and monitored. The state of Connecticut is also looking at technology and Medicare waiver to fund people to stay connected with their families and supporters. She added that when looking at these types of platforms, it is important that people with I/DD are not housed in school or developmental disabilities agencies, but rather housed in places that are portable for the families to have access to many systems.
Mr. Dan Habib asked Dr. O’Hara to explain how much of the technologies that he presented to the Committee are developed publicly, and are there any rooms for public and private partnerships in this area. Dr. O’Hara responded that in the United States, this is being mostly developed privately. However, there is public interest in these emerging technologies, but transferring them into the arena of healthcare has so far been private. Dr. O’Hara suggested that while writing the recommendations, the Committee make special emphasis on recognizing that people with I/DD is a group with significant health disparities and that increase commitment and funding in this area is needed form agencies like the National Institutes of Health (NIH).
Ms. Stephanie Enyart raised a question on the actual cost of these technologies for the families. Dr. O’Hara responded that depending on the environment and strategies in healthcare and education, the technology and the applications that go with it may be under $20 per person/month. But the Chrome technology is more expensive ($100 per person/moth). Ms. Pugh added that the cost-effectiveness as it related to people with ID when they have access to better preventive care, coaching, and managing their health care are great information for the Committee to use in the RTP.
Commissioner Bishop asked if there were things that Committee needed to consider regarding the HIPPA and Family Educational Rights and Privacy Act (FERPA) to include in the report. He added that he believes it is appropriate to recommend seeing some discretion in the privacy statues to assure accessibility and at the same time maintain privacy of individuals.
Recapping the Days’ Discussions and Providing Guidance and Directions
Julie Petty, Chair
Aaron Bishop, Commissioner and DFO
Chairwoman Petty and Commissioner Bishop thanked the meeting presenters, one more time. Chairwoman Petty briefly reviewed the day’s presentations. Commissioner Bishop encouraged the PCPID members to think about what they heard and to reflect on the information, and be ready to have a general discussion to provide ideas and direction on the second day of the meeting. Commissioner Bishop also encouraged all citizen and ex officio members of the Committee to start coming up with tangible recommendations in all the focus areas of the report. He added that the Committee will spend approximately two hours, tomorrow morning, to continue with discussions in each focus area (or perhaps include additional focus areas) and recommendations.
Day Two, February 20, 2015
Call to Order
Julie Ann Petty, PCPID Chair
The February 20, 2015 meeting was called to order by Chairwoman Petty who welcomed the Committee members to the second day of the meeting. She opened the floor to new ideas and discussions regarding the presentations given to the Committee the day before.
Discussions of Priority Areas
Mr. Berns stated that the Committee should think about recommendations to fund entrepreneurship to take the new technologies, available to people with disabilities, and gradually bring them to the market. Mr. Brandt noted that these technologies should also address the supported decision-making processes. Ms. Milbern added that these new technologies would change the landscape of support systems and create new cost-saving ventures.
Mr. Holler asked if the Committee makes a recommendation that requires funding, should it require an appropriation of funds from the Congress. Commissioner Bishop responded that, it depends upon what the recommendation is and if it is making a type of request for a specific agency to put dictionary dollars toward an activity, or if it is a request where the Committee advises the President to ask Congress to change a law. Mr. Holler asked when a company develops a new app, do they have to get federal approval to put it on the market. The Commissioner responded, “No.”
Ms. Milbern asked if the Committee knew what the precedent was for federal funds used for research and development (R&D). Commissioner Bishop responded that within some federal agencies (e.g., NIH, NIDRR), there are particular grants that are designed to support the initial process of the R&D. Mr. Strautmanis mentioned that one thing that the federal government can do is to leverage private sector funds, convene and create opportunities for the entrepreneurs to find out where the market is, and to support extending the reach of the products to those who cannot afford them.
Ms. Reynolds stated; it is important that the Report focuses on some of new innovations that are happening as people are looking at remote monitoring options, technologies that enable individuals to live in their home safely (e.g., cameras at the front door). Dr. White-Scott added that one of the areas that the Committee can help address is on a macro-level— technology makes a difference in the long run with efficiency. Mr. Blumenthal stated that the biggest driver of this effort is going to be the market, and the biggest purchaser of services for LTSS would be the federal and state governments through the Medicaid. He suggested that as part of PCPID recommendation, the CMS should be encouraged to recognize the effort that began in Colorado with making technology and access to technology part of the definition under HCBS for what the definition of comminute is (as it is ever evolving). He noted that it is important to ensure that CMS can recognize and adopt what must be delivered in terms of support and services, and then gives states the directive and the authority to put it into their cost calculations of what states use to establish their funding patterns. Mr. Blumenthal suggested inviting a CMS representative to the Committee’s discussions; because how these services are delivered at the ground level go through the CMS. Ms. Nobbie noted the rule that came out of CMS “is the floor and states can go above the floor in terms of what they want to provide to citizens who are using HCBS.” The Committee can encourage the states to open up their waivers to providing technology, and consumer-directed services and individual budgeting. Mr. Blumenthal added that the Committee should ask CMS to show leadership in this area and develop some clear and specific definitions.
Mr. Berns expressed belief that the biggest source of cash and in-kind support for people with ID are families. While it is important to address the CMS dimension, the Committee should not narrow this down and leave 75% of people with ID out of the equation. Mr. Holler suggested adding a recommendation in the area of education that encourage a requirement under the Department of Education for administrators and interns to receive training on technology.
Chairwoman Petty stated that a few of the members got together, the night before, and discussed all the presentations and based on the information received from the experts, they developed a new framework for the Report. Ms. Reynolds added that because there are many different themes coming all together, a few of the members got together to organize the conversation and discuss what the final Report should look like. Chairwoman Petty and Ms. Reynolds asked the Committee staff to distribute the hard copy of the new framework among the members.
Ms. Reynolds stated that the group believed that it is important for the Committee to categorize some of the innovations that individuals with I/DD are using for both cognitive accessible and specialized technologies. Ms. Reynolds added that this was divided into three end users (People with IDD, Supporters, and Systems) and four focus areas (Education, Community Living, Health and Wellness, and Economic Well-Being). The group talked about the specific recommendations that each presenter made yesterday and included them in the framework. The group also recognized some of the overarching recommendations about technology that came out of all conversations.
Ms. Reynolds noted that, starting with the first page, the group laid out a good vision and suggested writing two or three paragraphs on addressing issues like economic realities, unemployment, poverty, etc. The next section of the Report would need to dig in and define technology. It is also important to discuss the barriers and paradox of technology and funding issues. Mr. Habib stated that a framework that will be easy for the readers to review and comment on would help strengthen the final Report. Mr. Strautmanis thanked the workgroup, on behalf of all members, for putting the new framework together.
Ms. Rivera suggested reaching out to the United States Access Board and the Federal Communications Commission to learn about their recent initiatives. Mr. Leola Brooks added that the Committee may also want to check with the United States Agency for International Development and research its initiative at the West Virginia University. The university allows people with disabilities to borrow technological equipments and try them in their natural environment, such as homes, schools, and workplaces to help make a better decision as to whether the product will work for them. She added that the Social Security Administration conducts outreach activities with national organizations to receive their input in terms of what their constituents’ needs are.
One of the e-mail tweets by the public who followed the PCPID meeting was that some people in the “disability community” usually reject technologies like bionic arms, etc. The writer of the message encouraged the members to discuss these technologies as well.
Discussions on Statements and Recommendations for 2015 Report to the President
Ms. Eichhorn suggested adding an appendix to the Report to highlight the federal agencies list of resources/apps to identifying the best practices. Ms. Pugh made a suggestion to also include web links to some of the success stories. Ms. Reynolds recommended developing a section in which each Department of government to PCPID summarizes its technology initiatives. Mr. Habib suggested to universally designing the Report and contacting individuals who have expertise in these areas for help. Ms. Williams recommended including, in the Report, pictures of people with I/DD using technology in their daily lives.
Dr. Voight recommended adding employment as an additional focus area. Ms. Nobbie stressed the importance of not excluding the expanding retired population, and she suggested adding headings under the Economic Well-Being section to highlight areas such as employment, participation in the workforce, and retirement. Mr. Brandt suggested discussing the ethics of technology as well. Ms. Nobbie stated that when it comes to ethics, the Committee can discuss the area of technology related to ostracizing people and online bullying issues.
The members also discussed developing a new title for the Report. Dr. Karimi will start accumulating new ideas for the title of the PCPID 2015 RTP.
Mr. Habib continued discussing the new framework and referred to page 4 of the document. He talked about the second end-users to be supports (e.g., parents and direct support professionals). He described that the final end-users would be systems (e.g. Clouds, electronic records or surveys) that support people with I/DD to use new technologies. Acting Assistant Secretary Swenson shared with the Committee that remote monitoring helps with the independence of individuals with I/DD and reduces the budget associated with other methods of supports.
Chairwoman Petty requested a motion to approve the three end-users and four focus areas in the new framework. Mr. Peter Berns made the motion and Mr. Jack Brandt seconded this motion. The Committee voted, unanimously, to accept the three end-users and four focus areas in the framework.
Chairwoman Petty also encouraged the members to come to an agreement in defining the terms Technology and Cognitive technologies in the Report. Mr. Berns suggested having five set of volunteers on the Committee for each focus area, including the overarching recommendations. Ms. Reynolds cautioned the Committee that all the focus areas are going to flow from each other. She volunteered to coordinate the Phase I of preparing the PCPID 2015 RTP.
During the Phase I, the following group* will reach out to AbleLink Technologies (Mr. Dan Davies) to learn about the appropriate definitions for “Technology, Assistive Technology and Cognitive Support Technologies.” This task should be completed by Wednesday, March 4, 2015
*(Ms. Pugh, Mr. Habib, Mr. Brandt, Mr. Fialka-Feldman, and Mr. Strautmanis)
In addition, the following individuals were volunteered to assist with preparation of the “Overarching Recommendations” and sections related to the four (Education, Community Living, Health and Wellness, Economic Well-being) topic areas:
- Overarching Recommendations: Mr. Berns, Ms. Pugh, and Dr. Voight
Four Topic Areas of the 2015 RTP (Committee decided to develop draft and submit by Friday, March 20, 2015):
- Education: Mr. Habib, Zach Holler, Ms. Swenson, Mr. Thornton, and Ms. Weintraub
- Community Living: Mr. Blumenthal, Mr. Capone, Ms. Nobbie, Ms. Rivera, Mr. Thornton, and Ms. Weintraub
- Health and Wellness: Dr. Deborah Spitalnik, Ms. William, and Dr. Sheryl White-Scott
- Economic Well-Being: Mr. Berns, Mr. Brandt, Ms. Brooks, Ms. Petty, Ms. Rivera, and Dr. Voight
Ms. Reynolds will organize and send back all recommendations to the Committee by Friday, March 27, 2015.
The PCPID Members asked the Committee staff to look into the opportunity to schedule a two-hour conference call (preferably webinar) for late March or early April to discuss the recommendations and planning of the phase II.
In closing, Mr. Berns asked Commissioner Bishop about the AIDD’s plan with respect to the Executive Order and appointments of new members to the Committee in May 2015. Commissioner Bishop responded that the White House is currently working on the process of appointments/reappointments of new members to the PCPID. He added that as the PCPID DFO, he would like to provide an opportunity for individual members whose terms will expire in May to vote on the draft Report before they exit out. Commissioner Bishop asked Dr. Karimi to provide an update on the expiration dates of the PCPID Executive Order and Charter. Dr. Karimi responded that the PCPID Executive Order will be expired by September 30, 2015, and needs to go through the renewal process prior to this date. He also stated that the Committee’s Charter will be expired in May 2016. Commissioner Bishop requested the staff to start working and catching up with these dates. There were no more questions and/or comments from the members.
Chairwoman Petty made the motion to adjourn. Mr. Thornton seconded the motion. The meeting was adjourned.
PCPID Non-Local Members
- Submit all the receipts related to their travels to Washington, D.C. for the meeting to the ACL-AIDD Budget Office by Friday, February 27, 2015. (Completed)
Volunteer Working Groups
- Prepare the minutes of the September 3-5, 2014 Committee Meeting by Friday, October 10, 2014.
- Develop draft statements and recommendations and submit to Ms. Reynolds and Dr. Karimi by Friday, March 20, 2015. (Completed)
- Education: Mr. Habib, Zach Holler, Ms. Swenson (Ms. Glinda Hall), Mr. Thornton, and Ms. Weintraub
- Community Livingstrong>: Mr. Blumenthal, Mr. Capone, Ms. Nobbie, Ms. Rivera, Mr. Thornton, and Ms. Weintraub
- Health and Wellness: Dr. Deborah Spitalnik, Ms. William, and Dr. Sheryl White-Scott
- Economic Well-Being: Mr. Berns, Mr. Brandt, Ms. Brooks, Ms. Petty, Ms. Rivera, and Dr. Voight
Coordinator of Phase I (Ms. Reynolds)
- Organize and send back all recommendations to the Committee by Friday, March 27, 2015. (Completed)
- Convert the meeting recording into minutes by Monday, April 20, 2015. (Completed)
- Summarize the meeting discussions and send an email update to the members byFriday, March 20, 2015. (Completed)
- Schedule conference calls and/or meetings for the PCPID Workgroups by Friday, March 20, 2015. (Completed)
- Take notes of the work groups’ meetings and submit them to Ms. Reynolds by Friday, March 20, 2015. (Completed)