From the CE0

WASHINGTON, D.C. — What a difference a year makes.

As our country struggles to return to normal we know two things: 1) the pandemic has finally begun to subside, and 2) even as we face a dramatic slowdown in vaccination rates across the country a deadly strain of the coronavirus, the so-called Delta variant, is quickly spreading.

So, please be safe out there. Our nation’s health crisis is far from over.

On a related note, throughout the health crisis the staff and volunteers at our affiliates have been working hard, sometime at great personal risk, to provide support services for more than 150,000 people with disabilities and their families across the U.S. and Canada.

If you would like to help support the vital work of the affiliates, please visit our website to make a tax deductible donation today.

ADA turns 31

The Americans with Disabilities Act (ADA) became the law of the land on July 26, 1990.

During 2021 and on the ADA anniversary, the ADA National Network (ADANN) is marking this landmark event and the importance of promoting equal opportunity for people with disabilities.

Although life for people in the U.S. with disabilities has improved significantly since 1990, far more must still be done to ensure people with disabilities are finally treated as full and equal members of society.

If you’d like to help mark this important anniversary, check out the ADANN website for info on upcoming ADA-related webinars and activities, including the organization’s annual symposium in July and August.

Federal budget plan could boost funding for CP research

Earlier this year, United Cerebral Palsy joined The Cerebral Palsy Collaborative by signing on to a letter urging Congress to boost federal funding for cerebral palsy research.

The CP Collaborative consists of a diverse array of cerebral palsy stakeholders, including individuals with cerebral palsy, their families, researchers, physicians and a number of community-based advocacy groups, including UCP.

As part of the Fiscal Year 2022 budget process, U.S. Rep. Steven Cohen, D-TN, has proposed language that specifically encourages the Centers for Disease Control & Prevention (CDC) and the National Institutes of Health (NIH) to spend more on cerebral palsy research.

This week, UCP learned that Congressman Cohen’s language has made it into the proposed appropriation bill for the Departments of Labor, Health and Human Services and Education for the new fiscal year. Cohen’s Senior Policy Advisor, Craig Dulniak, told United Cerebral Palsy via email that the bill that passed out of the House Appropriations Committee includes nearly $6.5 billion in additional funding for the NIH and about $2.7 billion more for the CDC as compared to Fiscal 2021.

“While the House Appropriations bill does not have a line item for cerebral palsy research,” Dulniak said Rep. Cohen hopes “the combination of the increased funding and the report language [see pages 92 and 121]” will result in increased funding for cerebral palsy research next year.

A boost in funding this year could help lead to gains in “determining causation, improving early detection, and identifying the most effective treatments for cerebral palsy resulting in improved outcomes, less economic burden and better quality of life,” according to the CP Foundation.

UCP is proud to partner with The CP Collaborative by strongly urging Congress and the White House to approve the proposed boost in funding for the CDC and NIH, and UCP supports Congressman Cohen’s language encouraging the agencies to expand cerebral palsy research.

To make your voice heard on this matter, visit gogreen4cp.org and learn how you can help.

UCP hosting panel discussions at ACCSES’ summer conference 

UCP will host two panel discussions during the upcoming “ACCSES Shaping the Future Virtual Summer Conference,” that’s happening in two installments, July 20-22 and Aug. 3-5, 2021.

Our first panel, “The State of Disability Inclusiveness in Film and Television,” is July 21, 2:15 to 3:15 p.m., ET. Panelists will discuss whether today’s film and television industries are more inclusive of people with disabilities. Our second panel, “Advocacy, Representation and Support Services in the Latino Disability Community,” is August 5, 3:15 to 4:15 p.m.. This panel will examine the needs, representation and contributions of Latinos in the disability community nationwide.

A special preview presentation of the conference is scheduled for July 19 at 2 p.m. Eastern, featuring ACCSES Vice President of Government Affairs Kate McSweeny, who will deliver an update on federal policy changes affecting people with disabilities. The preview is open to all conference registrants and ACCSES members. 

In an interview for the latest episode of UCP’s new podcast series, Life Without Limits, McSweeny said the conference will include a wide variety of sessions offering info and expertise that disability service providers can put into practice, including two complimentary workshops on how to create a registered apprenticeship program.

The ACCSES conference line up includes an existing slate of speakers and presenters, including futurist, Alexandra Whittington, who will deliver the keynote address.

Check out a PDF of the full conference agenda. Click here to register. For details, contact Kate McSweeny at kmcsweeny@accses.org.

A special thanks

I close my column today by expressing my deep gratitude to everyone who’s been on the frontlines over the past 16 months supporting and caring for people with disabilities.

To the staff and volunteers at our 58 affiliates across the country, I thank you for your commitment to keeping our communities safe. And to my UCP team, the Board of Trustees and the members of our board committees, thank you for your hard work and diligence during the past year as well. UCP appreciates all you do.

Stay safe everyone.

The Case for Inclusion 2021 Special Report examines the impact of the COVID-19 pandemic on community-based disability services and provides a blueprint for a more sustainable disability services system.

Read the Case for Inclusion Report 2021.

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