PCPID Quarterly Meeting: July 19, 2011

Ms. Carol Wheeler asked about the status of staff efforts to gather recommendations from past reports and examine their implementation by the governmental departments and agencies. Ms. Roach replied that Committee members received a flash drive containing two documents: one citing all recommendations included in PCMR/PCPID Reports to the President and another citing categories of recommendations based on what is considered the responsibility of each of the thirteen PCPID ex officio member departments or national organizations. She expressed belief that determining the degree of implementation of recommendations contained in early reports may prove a challenging task.

Chairman Brett asked if the anniversary report would be due in January 2012. Dr. Spitalnik replied that the Committee seems to want a more immediate report, which would focus on employment, and a separate report for recognizing the 50th anniversary. Ms. Hillman, Ms. Edelsohn, Ms. Wheeler, and Ms. Weintraub supported Dr. Spitnalnik’s sentiment. Mr. Boatright advised that the Committee should try and have its first report submitted by the end of February, in order to impact the federal budget planning process. Ms. Wheeler agreed with this idea and advised that issues such as transportation and transition supports be included in the realm of employment.

Ms. Weintraub expressed belief that self-advocates need to be involved in the preparation of the report and wanted to know how the Committee would gather the self-advocates’ input if the new self-advocates have not been appointed to the Committee. Dr. Spitalnik stated that the Committee will find ways to include the opinions of self-advocates in the report. Ms. Ramirez supported the idea of having self-advocates be at the forefront and expressed her hope that employment be viewed as a step towards full community inclusion.

Considering the recent PCPID report submitted in 2009, Mr. Berns asked if the Committee would have something new to add to the area of employment. Dr. Spitalnik expressed belief that  the Committee would have something new to add because there are current events that should be brought to bear, such as the Department of Labor’s funding of the National Technical Assistance Center for Employment in New Jersey. These events can be related to Ms. Edelsohn’s earlier suggestion to look into companies that hire people with ID. In light of the economic downturn, the Committee must be sure that people with intellectual disabilities are included in plans for the recovery.

Commissioner Lewis asked the following questions:

1. What does the Committee have that is new or newly relevant to the area of employment that could be introduced in the report?
2. How do those things tie into potential recommendations? In response, Dr. Spitalnik suggested that the Committee use the August meeting to come to a consensus on the report topic and how the anniversary should be used and develop some form of a structure and planning. Then, in September, the Committee would begin work on both the short-term and long-term reports. Dr. McKenzie Anderson, Ms. Hillman, Ms. Ramirez, Dr. White-Scott and Ms. Edelsohn agreed with Dr. Spitalnik’s suggestion.

Mr. La Mell interjected that he believed the focus of the report should not be solely on employment, but on healthcare and health insurance. Dr. Spitalnik supported his belief and asked for Dr. White-Scott’s perspective, considering her specialization in the medical field. Dr. White-Scott suggested that there is a way to consider both employment and healthcare if the subject of employment is viewed broadly enough. Ms. Wheeler added that the Committee could also write a letter to the President on that subject in conjunction with the report.

Dr. Spitalnik then asked Commissioner Lewis if she had any suggestions, considering her role as the head of the Administration of Developmental Disabilities. The Commissioner explained that, from the Department of Health and Human Services’ perspective, there is certainly a focus on implementation of the ACA and the provisions that are beneficial to people with ID and their families and on how changes at the state level will affect investments into Medicaid. She emphasized that healthcare and health insurance was a timely topic. Commissioner Lewis also explained how the Centers for Medicaid and Medicare Services (CMS) are looking at rule changes about how home and community is defined. She shared that Section 2402A of the ACA “requires the Secretary to promulgate regulations to ensure that states are implementing systems of home and community based services that ensure that beneficiary choice and the opportunity to pursue a self-directed, independent life.” This is a section of the ACA which people with ID would likely be concerned about.

Dr. Spitalnik highlighted initiatives going on within the Centers for Disease Control and Prevention’s (CDC) National Centers for Birth Defects and Developmental Disabilities. These initiatives relate to the Committee’s commitment to prevention and the expansion of the knowledge of intervention and early onset disabilities. Mr. La Mell reemphasized that this was the time to develop the right policies about healthcare as these decisions would have long-lasting effects.

Dr. Spitalnik outlined options the Committee has regarding the short-term report: focus on employment, the ACA, or both; or, focus on one topic, while a small working group researches other issues and reports findings to the Committee as a whole. Such findings could be presented to the President in various forms (e.g., an action alert or a letter). Dr. Spitalnik asked whether the members should decide on the short-term/long-term report ideas while leaving the topic material open for further debate. Dr. White-Scott advised that this ramification of the process should also include the deadlines for both reports. Commissioner Lewis, after reaffirming Dr. Spitalnik’s statement of the inability to vote during this conference call, advised that members should focus on ways to bring something concrete for the full Committee and that this could be done through e-mail.

Commissioner Lewis reminded the Committee that half of the PCPID members were appointed for a year [May 2012] and the other half were appointed for two years [May 2013] and that this should be kept in mind when considering the timeline as there could be a change in membership next year. She explained that each member should know when his/her appointment expires. This information will be made available to Committee by the staff.

In response to Dr. Spitalnik’s request for an update on the status of appointment of more self advocates to the Committee, Commissioner Lewis explained that she was unable to give an exact date, but that two lists have been submitted with potential self-advocate appointees. She also stated that reappointments of current members were at the discretion of the White House. Ms. Weintraub asked if the Committee was allowed to reach out to self-advocates through other means while it awaited the appointment of self-advocate Committee members. The Commissioner responded that it was important for the Committee to use other resources. She explained that it would be possible to invite self-advocate speakers to the upcoming September meeting if they were able to give some insight into the current issues.

Mr. Berns suggested that he and Dr. Spitalnik, as co-chairs of the “Subcommittee on Report Topics and Themes,” use notes from the meeting to draft a written proposal that addresses the two reports, the timeline, and the role of Committee members in preparing the report. In the meantime, two small groups could each develop one point-of-view presentation (one on employment and one on the ACA/Medicaid) that defends why that particular theme should be the topic of the first report, and what the report would look like. These pitches would be presented at the August 16, 2011 full Committee conference call. Dr. Spitalnik advised the two groups to keep in mind that there are other forms of media available. Ms. Hillman de Velasquez and Chairman Brett supported this idea, and Dr. Spitalnik asked for volunteers for the two groups. Volunteers for the employment working group were: Elizabeth Weintraub, Carol Quirk, Micki Edelsoh, Carol Wheeler, and Dr. Annette McKenzie Anderson. The group for Medicaid/ACA is composed of Alison Hillman de Velasquez, Dr. Sheryl White-Scott, Dr. Deborah Spitalnik, Peter Berns, and Carl La Mell.

Dr. Spitalnik asked whether the members would prefer sharing a paper defending their suggested topic for the report, or making an oral presentation. Mr. Berns replied that someone from each group should prepare to present the pitch with an accompanying paper that is disseminated to Committee members. Dr. Spitalnik suggested that members of the groups begin exchanging emails in preparation for the August meeting. Ms. Hillman de Velasquez asked that all those who volunteered for ACA/Medicaid send her an email. She then volunteered to chair the ACA/Medicaid focus group. Ms. Carol Quirk agreed to chair the focus group on employment. Ms. Ramirez suggested that the Committee should also look into doing a short-brief or another type of correspondence for the topic not chosen. She also asked whether there was an exact time frame for the short-term report. Dr. Spitalnik advised that they make this decision after determining the topic during the August meeting. Commissioner Lewis made a request of the two work groups that they also advise on resources and individuals for the Committee to consider, and as they compose their presentation, keep staff informed, in case there are individuals who should be invited to the September meeting.

Dr. Spitalnik also reminded members of the upcoming Alliance for Full Participation Conference in Washington, DC that will be held from November 17–19, 2011.

Chairman Brett commended staff, Committee members, and Subcommittee co-chairs before bringing the meeting to close.

Ms. Roach announced that minutes of the conference call would be made available to the Committee early next week (July 25, 2011).