Thanks to All Who Attended the Topical Call on Google Adwords Grants

Thanks to our presenters, Mike Salmen and Dennis Csillag, for sharing their experience on the topical call about Google AdWords which included 16 affiliate participants. The information used in the presentation can be found on the Topical Calls section of the Affiliate Pages on UCP.org.
Special thanks to Dave Carucci, Executive Director of UCP of San Diego, for his introduction to Mike and Dennis, who also manage UCP of San Diego’s website and provide guidance on the use of Google Adwords for the affiliate.

Steptember 2017 Update

UCP signed a Memorandum Of Understanding with Cerebral Palsy Alliance to allow the two entities to work collaboratively on the Steptember 2017 campaign (a ready-made participant engagement activity designed to improve one’s health and wellness, and have a positive impact on the lives of people with disabilities).

For those affiliates that wish to participate, there will be no costs to you and 100% of fundraising collected by participants will be returned to affiliates at the end of the campaign (to be used at their sole discretion). A full report will be provided by CPA to each affiliate with a list of donors. Each participating affiliate will receive up to 25 free teams at a total value of $2,500. These can be used by staff, clients, or supporters. UCP will have its own customized landing page dedicated solely for UCP affiliates. However, the event website, as well as all communications and receipts, will be branded “CPARF” (Cerebral Palsy Alliance Research Foundation). One representative from a UCP affiliates will participate in the design of the landing page content. Questions can be directed to Anita Porco.

If your affiliate plans to participate, please notify Anita Porco, VP of Affiliate Network, at aporco@ucp.org by April 21, 2017. Once we know the affiliates that are participating, we will have a call to discuss, and to choose one person to work with CPA on the UCP website for Steptember.

Welcome New UCP Board of Trustees Members
UCP is pleased to welcome Keith Graham and John Hancock to the UCP Board of Trustees effective October 1, 2017. Both of them are CPAs with strong financial backgrounds and are also from affiliate boards, UCP of Mobile and UCP of Oregon and SW Washington respectively. Their selection to the Board of Trustees was approved at the recent annual meeting in Nashville.

Leadership Briefing
Given the transition occurring at UCP, there will be no Leadership Briefing in July.  If it is scheduled for a later date, we will advise the network. Individual orientations are being held with new executive leadership in affiliates.

Victory 100 Certificates

For those affiliates that sought assistance with Victory 100 certificates, they were sent to affiliates by Kaitlyn Meuser, Marketing Specialist, on March 27, 2017. If there are any corrections that need to be made or you have further questions, please contact Kaitlyn at kmeuser@ucp.org.

UCP CEO Search

Recently, the affiliate network received communication about the search for the CEO of United Cerebral Palsy. Information included an introductory letter, position description, and posting. If you are interested in the position, or know someone who meets the qualifications, a resume should be sent to Consult-ithr@missionrsi.com by April 7, 2017 at 5:00 PM PST.

Members of the Search Committee are:

Doug Bergman – CEO, UCP of Sacramento, Chair of the Search Committee

Diane Wilush – Chair, UCP Board of Trustees, CEO of UCP of Georgia & S.C.

Rick Forkosh – Interim CEO, UCP

Steve DeBiasi – UCP Board of Trustees

Glenn Harger – CEO, UCP of Mobile, PC Chair and UCP Board of Trustees

Chip Hurley – CPA – UCP Board of Trustees/Treasurer

April Kaylor – UCP of Metropolitan Detroit Board Member

Jennifer Keatley – CEO, UCP of Eastern CT., PC Rep.

Linda Maguire – UCP Board of Trustees, Board Member UCP of MetroBoston

Questions can be directed to Doug Bergman, Rick Forkosh, or Diane Wilush.

Washington Update:

Education The Supreme Court decided in favor of the family in the Endrew case. A helpful summary of what the decision means is here and our earlier blog post (with a link to the amicus brief we joined) is here.

Workforce Rick Forkosh and Ellie Collinson attended a roundtable with ANCOR in advance of their latest paper on the workforce crisis. The conversation was robust and we look forward to the direction that ANCOR takes with convening stakeholders on this important topic. More on their paper here.

Health Mark Lezotte moderated a panel at the annual Disability Policy Seminar. The timing of this year’s conference could not be better with AHCA under consideration. Moving forward, health policy reform may continue in Congress (especially in the budget process) but we will also be monitoring the efforts of CMS. If you haven’t already seen the letter Secretary Price and Administrator Verma sent to the governors about their regulatory plans, it is here. Expect delays in implementing HCBS enforcement at a minimum. We will be watching Section 1115 waivers too.

Social Security The House Ways and Means Committee recently held a second hearing on potential changes to the Representative Payee Program at SSA. UCP was invited to co-sign The Arc’s testimony.

Budget We continue to monitor the Trump skinny budget and proposed cuts to programs within agencies that support people with disabilities. Advocates have begun developing resources, here are a few if you’re interested in the topic. CCD issued a statement, and other statements of note include n4a and National Center for Learning Disabilities.

Regulation The CP and Deaf Organization (CPADO) worked with the FCC for multiple years to improve the quality of video relay services for individuals who have mobility disabilities. UCP continues to sign onto group letters produced by our allies on a range of topics.

Civil Rights Lastly, UCP has long been concerned with efforts on the Hill to reform the ADA with what are called “notification” bills. State legislatures are also looking at this issue. Many of our peers in DC have voiced opposition to any effort by Congress to pass the legislation as written. We will continue to monitor this issue, and also look for ways for UCP to potentially engage in advocacy moving forward.

For the latest insights, please be sure you’ve signed up for ANCOR’s Washington Updates or join their weekly Friday calls (call-in (866) 439-4480, PIN code: 59741638#). If you need assistance with accessing ANCOR’s resources, please write to Ellie Collinson at ecollinson@ucp.org.

Client-facing Resources

Self-Advocacy:

1) The Self Advocacy Resource and Technical Assistance Center (SARTAC) is announcing a national self-advocacy fellowship program. The fellowship will provide a year-long opportunity for people with intellectual and developmental disabilities to develop and grow their skills as leaders. Fellows will work with a supporting host organization, which receives $5,000 to pay the fellow. The deadline for applying for the fellowship is 5 pm Eastern on April 12th.

2) The Washington Post has begun a year-long series on Americans with disabilities. The first in the series can be found on their website, and at the end of the story they are seeking individuals for future pieces.

3) U.S. Department of Education seeks comments on a new Individuals with Disabilities Education (IDEA) Website. The Office of Special Education and Rehabilitative Services (OSERS) is seeking input from users of the IDEA.ed.gov website as part of their effort to provide updated, easy-to-navigate IDEA resources.

Organizational Resources

HCBS:

ACL has launched an informational webinar series about the agency’s commitment to and development of measures for home and community-based services (HCBS) quality and to provide a platform among internal and external stakeholders to share developments and collaborate on efforts concerning HCBS quality. The series will host a variety of presenters from ACL, the Centers for Medicare and Medicaid Services, National Quality Forum, SCAN Foundation, National Association of States United for Aging and Disabilities, and others. The first webinar has already reached capacity, but we will share more information as we find it.

Employment:

A recorded archive of the LEAD Center webinar, “What Disability Advocates Need to Know about New WIOA Equal Opportunity Provisions” is now available.

Managed Care:

The American Society on Aging has produced a new field guide that explores the landscape of managed care. This resource explains what managed care is, why it is necessary, and how community-based organizations (CBOs) and healthcare entities are establishing partnerships and creating new opportunities. The Field Guide to Managed Care also includes case studies that detail lessons CBOs have learned in their experiences through managed care.

LTSS:
The AARP Public Policy Institute recently released a report with an accompanying state scorecard on No Wrong Door Systems. This paper is the first in a series. The LTSS Scorecard measures state-level performance of LTSS systems that assist older people, adults with disabilities, and their family caregivers.

Respite:

ARCH postedthe archive of their recent webinar: “Sustaining Lifespan Respite and Strengthening Stakeholder Engagement.”

Take Action
NIH Seeking Public Comments on Draft CP Research Plan:

Congressional report language to the National Institutes of Health (NIH) requested a 5-year strategic plan for research on cerebral palsy. In response and in recognition of opportunities to address the burden of cerebral palsy through research, the National Institute of Neurological Disorders and Stroke (NINDS) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) held two workshops in 2014 and 2016, to bring together scientists, clinicians, and advocates for individuals affected by cerebral palsy. Based on the workshop discussions, a set of high priority recommendations were identified and classified into three priority areas: basic and translational research, clinical research, and workforce development. The draft NINDS/NICHD Strategic Plan for Cerebral Palsy Research presents these recommendations as a guide for the research community over the next 5-10 years.

NINDS and NICHD invite comments on this draft plan from researchers, individuals and families affected by cerebral palsy, professionals in cerebral palsy care, nongovernmental organizations, and any others with an interest in cerebral palsy research. Feedback is welcome on any aspect of the plan, including whether the plan addresses challenges and opportunities likely to yield meaningful advances in cerebral palsy research and clinical care, and how the research community should prioritize the recommendations in the plan.

Comments will be accepted through April 7, 2017, and should be submitted electronically at this page.

Centers for Independent Living Annual Program Performance Report Open for Public Comment:

On March 10, 2017, ACL released for public comment proposed revisions for the Centers for Independent Living Annual Program Performance Report (CILPPR). The notice for the Proposed Revisions is now on display in the Federal Register. ACL notes that the final CILPPR will not take effect until all comments have been reviewed and a final information intake tool is released. Comments are due by May 5, 2017.

Click here for more information on how to submit comments, and here for the notice.

ACL Seeking Comments on Principles of Person-Centered Serious or Advanced Illness Care

At ACL they believe that every person should be able to make choices and to control their own decisions, regardless of their age, disability, or illness. ACL, in consultation with stakeholders from the aging and disability communities, has drafted a set of principles to guide their work in this area, and to enhance existing programs and services related to serious or advanced illness for older adults and people with disabilities.

They are seeking input from older adults, people with dementia, people with all types of disabilities, and the families and caregivers who often support them. They also hope to hear from  partners in the aging and disability networks. Please send your comments, by May 12, 2017, to AdvancedIllness@acl.hhs.gov.