UCP Network News

Top Headlines:


These 7 Cerebral Palsy Advocates Need Notoriety

Man Whose Wife Was Paralyzed In A Car Crash Builds The Only Thing That Can Save Her

The Value Of A Volunteer Hour Has Increased 2.5% This Year

Programs For Kids With Special Needs Are In Trouble

Change Is Coming For Nonprofit Human Service Providers, But Will It Make Or Break Them?




September 6-7: West RAC Meeting, Honolulu, HI


September 11, 2018: Upcoming Network News Publication.


October 1-2, 2018: South RAC Meeting, Mobile, AL


October 6, 2018: World CP Day


October 29-30, 2018: Northeast RAC Meeting, Providence, RI


Change in Date: November 15, 2018: Volunteer Engagement Call 12:00 PM EST Topic: Update from UCP Board of Trustees. Presenters: TBD


December 11, 2018: Affiliate Topical Call 3:00 PM EST Topic:Bellows Applications Q&A. Presenter: Mark Boles, Chair, Bellows Committee.


Save the Date: March 24-26, 2019: UCP Annual meeting in Chicago, Illinois.

CEO Briefing for Affiliates

Greetings Affiliate Executives!

While summer is winding down, UCP National is also heading towards the end of the Fiscal Year 2018. One of the highlights this year is our continued conversation with the Cerebral Palsy Foundation. Twelve UCP Affiliates have joined the “Working Committee” along with members of the CP Foundation to define critical initiatives and identify synergies that mutually benefit both respective organizations, and the disability community served. To achieve this objective, the Working Committee has identified three successful programs offered by the CP Foundation. They are: Just Say Hi Campaign in Schools, Research for Early CP Detection in Infants, and the CP Channel App. The collaboration between UCP and CP Foundation is only the beginning. I will explore connecting with other organizations such as the CP Foundation and ANCOR to discuss knowledge transfer, financial resources for building internal capacity, research, advocacy and much more to benefit our valued Affiliates.

Just a reminder, the 2019 Annual Meeting is scheduled for March 24-26, 2019 in Chicago with a hotel pending in the Chicago Downtown Magnificent Mile area. Your participation and attendance are essential as we move into a more profound dialogue about the roadmap of UCP’s promising future.

Last, Anita and I look forward to attending the West, South, and North East RAC meetings in September and October. We will also conference by phone with the MidWest RAC.

Enjoy the final days of summer! Thank you and your teams for the dedication and commitment to the UCP Mission!


Armando A. Contreras


Appointment of New Member to Bellows Committee

Our sincere thanks to Rick Fleetwood who served on the Bellows Committee since its inception! Due to personal obligations, Rick has recently resigned from the Committee. UCP Chair, Diane Wilush, appointed Linda Maguire to the Committee with the approval of the Board of Trustees. Linda has served on the Board of Trustees for many years and most recently has been the Vice Chair of the Board. For over 20 years, Linda has volunteered as a Board Member at UCP of MetroBoston. Linda will rotate off of the UCP Board of Trustees in September when her term expires. The Bellows Committee welcomes Linda!

The Bellows Committee currently consists of: Chair, Mark Boles, Peter Keiser, Ruth Gullerud, Brenda Yarnell and Linda Maguire. Thanks to all of the members for their service on this important committee.


RAC Meetings

Current RAC Chairs are:

Laura White, CEO, UCP of Tampa Bay

email: lwhite@sunrisegroup.org

Keith Kearney, CEO, UCP of Hudson County

email: kkearney@ucpofhudsoncounty.org

Lynn Carpentier, Executive Director, UCP of Minnesota

email: lcarp@gillettechildrens.com

Roger Slingerman Interim Chair and CEO, UCP of Central California

email: rogers@ucpcc.org

Fall RAC meetings have been determined as follows:

West RAC – September 6-7, 2018 in Honolulu, HI.

South RAC – October 1-2, 2018 in Mobile, AL.

Midwest RAC – TBD

Northeast – October 29-30, 2018 in Providence, RI.

Any affiliate CEO/Executive Director is welcome to attend any of the RAC meetings. If you do plan to attend a RAC outside of your region please inform your RAC Chair and the Chair of the RAC you are attending.


Affiliate Topical Call December 11, 2018 3:00 ET

The December Affiliate Topical Call will focus on the Bellows Funds. Mark Boles, Chair, Bellows Committee with be available to answer any questions about the Bellows Applications process, allocations etc. This will also be an opportunity for affiliates to share how they are using the funds for the individuals they serve and some best practices using the Bellows stories to raise awareness about the affiliate.


Volunteer Engagement Call November 15, 2018 12:00 ET

The Volunteer Engagement Call for Volunteer Board Members of affiliate boards will provide an update from UCP Board of Trustees members for the fiscal year ending September 30, 2018. If you do not have a volunteer participating in the Volunteer Engagement calls and want to add someone please contact Anita Porco at: aporco@ucp.org.


Affiliation Agreements

Thank you for your cooperation in reviewing the territory addendums that were sent to each affiliate in June. If you did not respond by the deadline of July 13, 2018 the addendum for the affiliate will be the same as it was in the addendum as sent to the affiliate and in charters that were last signed in 2007. Many affiliates required expansion of territory requests or Memorandums of Understanding to bring the territory into alignment with state contracts and changes made in zip codes and cities within counties.

We will soon be preparing the new affiliation agreements for signature by each affiliate. We will appreciate your cooperation in reviewing the agreement and accompanying documents carefully, and then signing and returning the agreements promptly. We plan to have this last part of the process completed by the beginning of the new fiscal year- October 1, 2018.


Congratulations to UCP of Orange County

UCP of Orange County recently completed their Annual Gala and raised a record $470,000.00. Read the entire story here.


UCP of Greater New Orleans Opens Clinic

On Saturday June 30, 2018 UCP of Greater New Orleans opened the Oscar J. Tolmas Restorative Therapy Clinic for Children and Adults. The grant-funded clinic provides Functional Electrical Stimulation (FES) powered systems, designed to help people with neurological disorders or people in critical care achieve their full potential. Read the press release here.


Cerebral Palsy Research Network “All of Us” Research Initiative

Cerebral Palsy Research Network has posted a new item, ‘NIH Launches “All of Us” Research Initiative.’

In March, CPRN posted about its participation in the National Institutes of Health (NIH) research priority setting for the new “All of Us” research program. On Monday, NIH formally launched this program and is now enrolling people in the United States. This incredibly ambitious study will examine the DNA and track the health of 1,000,000 Americans for 10 or more years. It has the potential to create new learning about genetics and other factors that can influence disease and outcomes across the lifespan. It is free to enroll and will provide you with valuable information based on the data the study collects.

The study is open to anyone 18 years of age or older. For people with cerebral palsy, the “All of Us” research has the potential to provide invaluable learning about the long term outcomes in CP in comparison to the rest of the US population. In CPRN’s recently completed Research CP project, longitudinal studies were deemed to be one of the most important constructs for research into CP. While “All of Us” is not specifically focused on CP, the planned outcome measures could uncover important findings about the health impacts of having CP. CPRN will continue to follow this study and look for how we can collaborate with NIH to pursue our research agenda. We encourage you to visit the All of Us website to learn more about participating in this important research endeavor.


They Deserve More Campaign

The Illinois General Assembly and the Governor just approved the fiscal year 2019 budget and it includes a $.50 cent hourly increase for Direct Care Professionals who work with individuals who have intellectual and other developmental disabilities. Last fiscal year Illinois received a $.75 cent per hour increase. This will raise the hourly starting AVERAGE wage paid to approximately $11.00 per hour depending on the various geographic areas in the State of Illinois. This result is due to the They Deserve More wage campaign organized and conducted by 80 statewide provider and advocacy organizations and the labor union in Illinois. UCP Seguin was very integrally involved in the campaign.


ANCOR We Have A Stake Campaign

Affiliates are encouraged to join the We Have a Stake Campaign and share your stories at www.wehaveastake.org.

The theme is: Included.Supported.Empowered. and you can make a difference by becoming involved.

The campaign aims to celebrate the everyday work of providers and professionals who make it possible for people of ALL abilities to thrive as individuals and as active, valued, contributing members of our communities. Once you join the campaign you will receive an email telling you the ways you can share a story, follow the campaign on social media or support the campaign.


ANCOR Forum Helpful Tool

Along with the UCP Private Facebook Group, the ANCOR Forum is a great place to get information from your peers.

Michelle Jackson, CEO, Ability Connection Oklahoma, recently posed the following question to the ANCOR Forum:

“Question: Board Compensation Part VII of the 990, Section A, Column E asks about “Reportable compensation from related organizations (W-2/1099-MISC)” In order to place a zero in these boxes, we have to ask each board member – however, the definition of “related organizations” is unclear. Does anyone have a sample statement they ask board members to sign, regarding compensation and related organizations? Would you be willing to share?”

Michelle commented after receiving assistance: “Thanks so much! I’ve received some fantastic information here and by private message. This group is invaluable!”


Home Depot Reminder

The Home Depot Rebate Program is still in effect and your support of the program is appreciated. If you have not provided the Home Depot Account Number for the affiliate or the account number for the credit card that is used to make purchases at Home Depot and wish to support the program we welcome your participation. Please contact Anita Porco aporco@ucp.org for more information or to provide account numbers.