Top Headlines:


PROVAIL Celebrates Their 75th Anniversary


New Video for UCP of Greater Cleveland’s LeafBridge Center




June 27: Affiliate Topical Call: Tips for Successful CARF Accreditation. 3:00 PM EST. Call-in #: 1-888-402-6958.


August 27-31: HCBS Conference, Baltimore, MD. More information here.


October 11-13: 2017 National Lifespan Respite Conference, Huntsville, Alabama Register here.



UCP Wheels for Humanity Pilot Study


UCP Wheels for Humanity (UCP Wheels) is launching the world’s first Wheelchair User’s Voice (WUV) pilot study that will collect data on the impact of an appropriate wheelchair to a user’s quality of life. The study will also look at how wheelchairs are utilized by people with disabilities in developing countries. UCP Wheels received a $1 million grant from to implement this unique study. Congratulations! View the press release here.


Camilla Rucinski of UCP of Greater Dane County Announces Her Retirement


Camilla Rucinski, Executive Director of UCP of Greater Dane County, took a position with the affiliate in May of 1977 and later became the Executive Director. Camilla states: “it changed the trajectory of my life. I had the privilege of meeting with so many families, children and individuals who all had stories to share and dreams for the future. I joined the ‘UCP Family,’ and with many, many talented staff, UCP Board members, families, individuals, and community members, we worked to create the future together.”


On March 13, 2017, Camilla announced her retirement from the affiliate, to be effective at the end of the 2017 calendar year. She will be working with the Executive Committee of the Board, along with the Chair of their Personnel Committee, to plan for her successor.


Camilla says that the local organization that she entered in 1977 invited change and became flexible and proactive. Using that same formula they created their 2017 Strategic Guide, which offers a strong foundation for both the challenges and opportunities that Family Care presents for their consumers, and for UCP of Greater Dane County.


UCP sincerely thanks Camilla for her service of 40 years with UCP of Greater Dane County, and wishes her a happy retirement!

UCP Purpose, Message, and Mission Statements


At the UCP annual meeting in March, the purpose and message statements, proposed by the Marketing Sub Committee of the Affiliate Services Committee, were approved by the membership. In addition, as part of the By-Laws revisions adopted by the membership, the purpose of the organization was also changed. The purpose of the organization has traditionally been the Mission Statement of the organization.


UCP Purpose Statement: United Cerebral Palsy (UCP) is a trusted resource for individuals with Cerebral Palsy and other disabilities and their networks.


UCP Message Statement: Individuals with Cerebral Palsy and other disabilities deserve every opportunity to live life to the fullest. UCP strives to make that happen.


By-Laws (Mission): The purpose of the Corporation shall be to promote the independence, productivity and full citizenship of people with cerebral palsy, intellectual and developmental disabilities, and other conditions, through an affiliate network.


The words in bold are the additions that were approved by the membership.


Phishing Attacks and Security Issues


We have received warnings about a recent wave of ransomware phishing attacks that try to trick you into opening “secure documents.” One receives an email that looks like it is a DocuSign or EchoSign or Secure Adobe PDF notification that you have  an important document attached to review. These emails will even appear to come from someone you know! Recently UCP had a breach to the email address from an affiliate’s email that had been cloned. Fortunately, it was caught early and no harm was done. We all need to be cautious and alert!


Washington Update


The past two weeks have been marked by steadily increasing lobby activity on AHCA,as well as other issues of importance to people with disabilities, as more groups host their annual Lobby Days.


UCP was a co-sponsor of the ANCOR and CCD-led Rally and lobby day to oppose AHCA on June 6th.


We are also an endorsing organization for a joint ITEM/HAB/CPR coalition Congressional Staff Briefing and lobby day about the importance of habilitation services and supports on June 27th, and as a guest for today’s Roll on the Hill. Also, in July, UCP will be a co-host of a Congressional Staff Briefing on Employment and the ADA.


A few weeks ago, UCP joined a group letter regarding potential changes to the NEMT transportation program. A piece in Inside Health Policy (not for distribution) further explains the issue.


Organizational Resources


Funding Opportunities:
1) ACL has announced a new funding opportunity to increase integration and independence of individuals with developmental disabilities and to improve the quality of home- and community-based services (HCBS). This is to be done by developing and testing one or more model approaches of a coordinated and comprehensive system for enhancing and ensuring the independence, integration, safety, health, and well-being of individuals living in the community. ACL is hosting an informational webinar to learn more about the funding opportunity TOMORROW from 1:00 – 2:00 p.m. ET. Click here to register for the webinar. Applications for the grant are due by July 24th.


2) A new grant opportunity from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL has been announced under the Rehabilitation Engineering Research Centers (RERC) Program for Technologies to Promote Exercise and Health Among People with Disabilities. The RERC on Technologies to Promote Exercise and Health Among People with Disabilities must investigate access to exercise by people with disabilities in both recreational and clinical settings, and conduct research and development toward improved accessibility of recreational equipment, facilities, and environments. Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on July 31, 2017.

1) The CMS Office of Minority Health (CMS OMH) recently released an issue brief on increasing the physical accessibility of health care facilities. Read more here.


2) The Association of Maternal and Child Health Programs released a report on Title V programs for children and youth with special health care needs. See the executive summary here.



ACL has begun a series of webinars about their interest in HCBS quality measures. The first webinar was in the end of May (slides are here) and the next one will be June 28th. Click here to register.



The Medicaid MLTSS Institute released the report “Demonstrating the Value of Medicaid MLTSS Programs.” Click here to read more.



1) The May issue of the LEAD Center’s Policy Update focuses on the interplay between Medicaid and Employment Services. Read more here.


2) LEAD is also hosting a webinar on June 26th about Guided Group Discovery, a universally designed employment program being piloted across the US. Learn more here.


3) Webinar: “Reviewing the Evidence: What Works in Disability Employment Services.” Mathematica’s Center for Studying Disability Policy (CSDP) is hosting a webinar on June 22nd featuring experts from Mathematica who will discuss and present on the developing evidence on promising employment interventions.Click here to learn more.


Long-Term Care Arbitration Rule:

CMS has issued proposed revisions to arbitration agreement requirements for long-term care facilities. These proposed revisions would help strengthen transparency in the arbitration process, reduce unnecessary provider burden and support residents’ rights to make informed decisions about important aspects of their health care.Learn more here.


The Georgetown Center on Poverty and Inequality released a report entitled “Building the Caring Economy: Workforce Investments to Expand Access to Affordable, High-Quality and Long-Term Care.” The report proposes jobs for caregivers that would help alleviate two national concerns for caregivers: the need for quality employment and the need to still act as caregivers. Click here to read more.



The National Down Syndrome Congress and the Advocacy Institute have put together a guide for state advocates about ESSA draft plans. Click here to learn more.



The Home For Life Foundation released a report funded by the Ford Foundation: “Building an Intentional Community in Delaware.” Learn more about their work here.


Take Action

1) Support the Lifespan Respite Care Program Reauthorization Act (H.R. 2535; S. 1188) introduced in House and Senate!

Rep. Jim Langevin (D-RI) and Rep. Gregg Harper (R-MS), co-chairs of the House Bipartisan Disability Caucus, introduced the Lifespan Respite Reauthorization Act (H.R. 2535) on May 18, 2017. The companion bill (S. 1188) was introduced in the Senate by Senator Susan Collins (R-ME), chair of the Senate Select Committee on Aging and a member of the Committee on Health, Education, Labor and Pensions (HELP), and Senator Tammy Baldwin (D-WI), who is also a member of the HELP Committee that has jurisdiction over the bill.

The Lifespan Respite Care Program, through grants to states, helps build coordinated State Lifespan Respite systems to improve access to services, helps family caregivers pay for respite or find funding sources, encourages development of new and innovative community and faith based respite opportunities, and trains respite workers and volunteers. The legislation would reauthorize the program through 2022 at an authorization level of $75 million over five years ($15 million each year). Learn more here.


Ask your U.S. Representative and U.S. Senators to cosponsor the Lifespan Respite Care Reauthorization Act of 2017 (H.R. 2535; S.1188). Call the Capitol Hill Switchboard at 202-225-3121 and ask for your Representative’s or Senator’s office and then ask for the health or disability staff. If you don’t reach them, leave a message!
2) UCP is a member of the Modern Medicaid Alliance and yesterday MMA launched their Medicaid Solutions series to call attention to the health innovations developed in Medicaid. Interested states and organizations are invited to share their stories for inclusion in the seriesvia the MMA website.