UCP Network News

Top Headlines:

Once Upon A Time Puts Money In UCP’S Coffers

Atlanta Brothers Defy Odds On Incredible Journey To Compete In IRONMAN World Championship

Oregon Cross Country Runner With CP Receives Nike Sponsorship

Pedicab Business Owner Hopes To Bring Smiles To The Faces Of United Cerebral Palsy Promgoers

Rachel Byrne Accepts The Fred P. Sage Award For CPF’S CP Channel App

Friendship Social Lifts Spirits Of Those Whom ‘Time Forgot’


November 15, 2018: Volunteer Engagement Call 12:00 PM ET Topic: A UCP Year in Review

Presenter: Diane Wilush, Chair UCP Board of Trustees

December 11, 2018: Upcoming Network News Publication.

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

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

CEO Briefing for Affiliates

Greetings to All!

Hope all is well. Anita Porco and I participated in the last of the four RAC meetings, that is, the Mid-West and the North-East. Both sessions provided the space for a sincere and broad dialogue about the future of National and it’s collaboration with the Affiliates. The topics discussed: Financial status of National, FY19 priorities (National to increase resources for Affiliates), Annual Meeting topics, and reflection questions focused on the direction of National, to name a few of the many conversations that took place. Furthermore, it was evident that National has moved the needle to increase the trust levels and communications with our valued Affiliates.

Also, I’m excited to announce the FY18 financial results are favorable! Fiscal year 2018 ended with a net surplus of $1.1M ($966K excluding investment activity). The unrestricted net asset balance (available for operations) at the end of 9/30/17 was negative ($559K). However, as of 9/30/18, the unrestricted net asset balance is a positive $449K. In addition, the $800K line of credit has been paid down to zero (0)! With the focus on financial sustainability in FY18, we rolled up our sleeves to strategically move in this direction. Thank you to our Finance Committee, BOT, Finance Department (Alliance) for their collaboration and teamwork!

The first ever UCP Virtual Town Hall between the Execs and myself took place on Thursday, November 8, 2018. Over 20 Executives joined the call! This event provided an opportunity to share the progress National has made in the past year. It also facilitated an informal and proactive discussion which included; UCP’s 70th Year Anniversary, Bellows Fund, Policy, and creating a National Campaign to share the stories and miracles experienced by the thousands of families served by the Affiliate Network. I appreciate the feedback and collaborative spirit from those participating in this inaugural Virtual Town Hall!

Last, I would like to thank the National Team, Anita Porco, Michael Ludgardo, and The Alliance for Strong Families, Consult-It (UCP Sacramento), UCP of MetroBoston, the Board Committees, the Board of Trustees, the Affiliates and the unwavering leadership of Diane Wilush (Trustees Chair) for their commitment and dedication in making this past fiscal year productive and successful.




2019 UCP Annual Meeting

The 2019 Annual Meeting of the Members of the Corporation will be held at the Embassy Suites Chicago Downtown Magnificent Mile. The address and reservations phone number are as follows:

511 N. Columbus Drive, Chicago, IL. 6061, telephone: 800-525-2509. Embassy Suites link for reservations are:

Click here to make a reservation at the Embassy Suites for the UCP Annual Conference.

The room rate will be $149.00 for a king-size bed, non-smoking room. We will have complimentary Wi-Fi in the meeting rooms and guest rooms. Made to order breakfast and evening manager’s receptions are also included. If you are wondering what is available on the ‘Magnificent Mile’ click here: https://www.themagnificentmile.com/. More details to follow as they are available!

Registration is available for Affiliate staff to register for the meeting. The rate per person is $225.00. Please note details in the reservation form.

Click here to register for the UCP Annual Meeting.

You can also visit www.ucp.org and the 2019 Annual Meeting information is housed under News and Events.

Since all of the RAC’s have discussed Table Topics for the Annual Meeting, we will be building plenary speakers and table topics around the topics that have been suggested.


NOD Launches Campaign

National Organization on Disability’s LOOK CLOSER campaign launched in October. The purpose of the campaign is to urge employers and HR directors to think differently when hiring.

The link to the news release is here plus some resources that can be shared:

Click here for news release.


Key Staff

UCP is trying to assemble the final pieces of the ‘Key Staff’ from Affiliates. If you have changes in your ‘Key Staff’ during the past year please send an updated list or if you have not yet provided the information please do so. Affiliates continue to ask for ways to connect with their peers in similar positions in order to share information. Lists can be sent to aporco@ucp.org.


RAC Meetings

All of the Fall RAC meetings have been completed. Each RAC received information about a number of topics including UCP Finances, 2019 Budget, Priorities for 2019, Organizational Structure, the Affiliate Network and the Bellows Process.

Additionally each meeting provided an opportunity to provide feedback on:

  1. The Proposal for Handling Bequests

  2. The Reflection Questions in the Plan for Expansion of the Affiliate Network and Retention of Affiliates

  3. Topics for Roundtable discussions at the Annual Meeting

We appreciate the attendance, dialogue and support at each meeting.


American Red Cross Discount Change

UCP received a 30-day notice from the American Red Cross that the rate for Adult CPR/AED and First Aid Training would have a modest increase.

All Affiliates should have received a letter referencing the $2.00 price increase that will be effective beginning January 1, 2019. Therefore, the Adult CPR/AED and First Aid courses will be $12 per person, which is over a 50% discount off of the American Red Cross standard pricing for UCP Affiliates.

If you are not using the American Red Cross for your training needs and taking advantage of this discounted rate you should compare your current pricing for the same training. You also should have received an email and flyer from me within the past few weeks.

Click here to access the flyer.


Dr. Ron Cohen Receives Award

Congratulations to Dr. Ron Cohen on receiving the “Housing Hero” Award at the Lanterman Housing Alliance’s 2018 Housing Thought Leaders’ Summit. Ron received the award for his expertise in and dedication to developing affordable, accessible housing for individuals with intellectual and developmental disabilities. All of us at UCP recognized Ron’s expertise in housing and we are delighted to see that he has been recognized by others as well!

Click here to read more.


Reminder: Clarification of Use of UCPA

We understand that many Affiliates continue to use “Association” in their trade name, based on historical usage of this term in the UCP National name (“United Cerebral Palsy Association”). As you know, we have since transitioned to using “United Cerebral Palsy” without the term “Association” and have updated our Brand Usage Guidelines to reflect this change. Accordingly, all Affiliates should transition to using the formulation “United Cerebral Palsy of [Territory]” or “UCP of [Territory]” rather than any formulation that continues to include “Association” in your public-facing trade name. However, UCP will work with the Affiliate to transition the phase out of the use of “Association” in your public-facing trade name and related materials (e.g. your website), and we note that you need not make any changes to your existing legal entity name and organizational documents (e.g. your articles of incorporation) as long as the affiliation with UCP is in effect.




Hurricane Florence and Hurricane Michael


As you know the South and East Coasts have been experiencing a series of weather events. In some cases the Affiliate and their buildings are ok but staff members have lost their homes or had significant damage and in some cases lost vehicles and personal possessions as well.


Easter Seals UCP of NC and VA Children’s Center in Wilmington was severely damaged; however, 300 Wilmington and New Bern area employees were personally impacted by Hurricane Florence. The degree of personal property loss varied across the region, from flooded cars, fallen trees and roof damage for most, to the severe structural and interior damage of the homes/apartments of more than 100 employees, nine of whom pretty much lost everything.


Many of you have asked how you can help so here may be some ways for you to consider:


  • Easter Seals UCP of North Carolina is collecting Walmart or Target gift cards for staff. They can be sent to:


Leigh Elrod, Chief Human Resources Officer

Easter Seals UCP of North Carolina

5171 Glenwood Ave, Suite 211

Raleigh, NC 27612-3266



While the UCP Affiliate structures that are owned by Sunrise were minimally affected by the hurricanes, Sunrise employees were greatly affected with loss of property and personal possessions. Walmart gift cards that can be distributed to staff to purchase clothing and other personal effects are very much appreciated. If you wish to provide a gift card/cards they can be sent to:


Zach Wray, CEO

9040 Sunset Dr.

Miami, FL 33173


Georgia and South Carolina were fortunate and had little damage so is focusing on helping North Carolina and Florida.


Alabama Affiliates were spared during these two events.


The Affiliates in Florida and in North Carolina very much appreciate the generosity of other UCP Affiliates that have responded to the needs of their staff as a result of these natural disasters!


This note of appreciation is from Luanne Welch, CEO of ESUCPNC:


“The outreach from our UCP colleagues has meant so very much to our affiliate. We especially thank UCP Mobile, AL & UCP Georgia for financial gifts to support our staff relief fund. Their kindness truly blessed 4 of our employees who lost their homes in Florence. Although facing a long road ahead to recover personally, they are grateful to be back at work serving our collective mission.”



Brand Standards and Usage Guidelines


There has been an additional figure 8 added as an acceptable logotype layout to the brand standards under Using the Logo and Tagline.


Click here to access the revised standards.



Cerebral Palsy Association of British Columbia Change


UCP recognizes and thanks Feri Dehdar for her service as Executive Director of Cerebral Palsy Association of British Columbia! Feri was a strong supporter of ‘Life without Limits’ and assisted in growing the Affiliate. Please join us in wishing Feri well as she departs CPA.


Lisa Brooks has assumed the position of Executive Director. She started at the Affiliate on October 1, 2018 and has been working with Feri through transition. Lisa has been in the disability space and came to the Affiliate from the British Columbia Centre for Ability. Welcome Lisa!





Organizational Support Request


Senator Casey will soon introduce the READI for Disasters Act. This legislation would ensure the needs of individuals with disabilities and older adults are considered and addressed during disaster preparation, response, and recovery and mitigation. A one page description, draft bill text and templates for support and co-sponsorship are attached. Full legislative language should be ready this week. Senator Casey plans on introducing the READI for Disasters Act the week of November 12th and he would love to have your support as he moves forward with the legislation.


Senator Casey’s staff looks forward to hearing from you. Please let them know if you have any questions.


Josh Dubensky

Policy Aide

United States Senate Special Committee on Aging

628 Hart Senate Office Building

Washington, DC 20510

phone: 202.228.3771 | fax: 202.228.0604



For more information or to cosponsor, please contact michael_gamel-mccormick@aging.senate.gov



READI for Disasters Act


Why do we need the bill?


As disasters steadily increase in intensity and frequency, their threat to communities continues to grow. The complex planning surrounding the preparation and response to major disasters requires a coordinated effort between federal, tribal, territorial, state, local and non-governmental agencies to address this threat. Disaster management succeeds when every level of public and private life comes to the table to address the diverse needs of affected citizens. However, without dedicated training and resources for agencies and a place at the table for disability leaders, 61 million individuals with disabilities, countless older adults and many others with access and functional needs are often forgotten when a disaster strikes. A coordinated, multi-level response is needed to ensure the needs of individuals with disabilities, older adults and others with access and functional needs are met during a disaster.


What will the bill do?


This bill establishes a National Commission on Disability Rights and Disasters to study the needs of individuals with disabilities, older adults and others with access and functional needs during emergency and disaster preparation and planning, response, recovery and mitigation. Following the Commission’s research, it will provide recommendations on how Federal, tribal, territorial, state, local and non-governmental response agencies can better coordinate and provide for the diverse needs of individuals with disabilities before, during and after a disaster. This bill will also provide for greater funding to direct disaster planning resources towards the needs of older adults, individuals with disabilities and others with access and functional needs and disaster-affected communities.


Section-By-Section Summary


Sections 1 to 4 – Title, Findings, Purpose and Definitions


Officially names the legislation, lays out the purpose of the bill and details the definition of terms used.


Section 5 – Use of Disaster Response Funds


Amends the Stafford Act to address the needs of individuals with disabilities in Federal disaster funding.


Section 6 – Training and Technical Assistance Disability and Aging Disaster Centers


Provides financial support for developing and providing technical assistance and training to State and local emergency managers and disaster relief agencies. Will ensure the needs of people with disabilities and older Americans are addressed throughout emergency preparedness, disaster response, recovery, mitigation and community resilience.


Section 7 – National Commission on Disability Rights and Disasters


Establishes the National Commission on Disability Rights and Disasters. The Commission will study and provide recommendations on how to ensure emergency preparedness, disaster response, recovery and community resilience efforts meet the needs of people with disabilities and older Americans.


Sections 8 and 9 – Review of Department of Justice Settlement Agreements and Government Accountability Office (GAO) Report


Requires DOJ to create an oversight Committee to review all Americans with Disabilities Act settlement agreements related to disaster response activities for the years 2005 to 2017. Also directs GAO to investigate whether past federal disaster funds have been used to ensure accessibility to emergency programs and services.


For more information or to co-sponsor, please contact michael_gamel-mccormick@aging.senate.gov.





We appreciate hearing the good stories associated with recipients of the Bellows Funds. Please send stories to us that can be included in Network News or the Life Without Limits newsletter like this one from UCP of Central Arizona. https://www.facebook.com/ucpofcentralaz/



UCP Development – Fundraising Opportunity


Michael Ludgardo, Manager of Development, would like to remind UCP Affiliates that the Direct Mail Partnership Program between Affiliates and National is still available. If you are interested in raising funds for your Affiliate with no cost to you, please contact Michael at: telephone: (202) 973-7133 or email: mludgardo@ucp.org for more details.


Thank you to the Affiliates that have participated in the program so far!