UCP National Names Armando A. Contreras As The Next President & CEO

Contacts: Diane Wilush
 Richard Forkosh



 
 UCP National Names Armando A. Contreras As The Next President & CEO (Washington, DC) – United Cerebral Palsy, Inc., (UCP) the leading national organization which advocates and promotes the inclusion and full citizenship of individuals living with cerebral palsy and other disabilities, announced today that its Board of Trustees has named Armando A. Contreras as President and CEO effective June 5, 2017. Contreras is currently the CEO of UCP of Central Arizona and will replace Richard Forkosh, who is currently serving as UCP Inc., Interim CEO.“We are delighted to have Armando join UCP as the new President and CEO,” said Diane Wilush, Chairman of UCP National’s Board of Trustees. “The selection process was rigorous, and Armando is the perfect choice; his leadership at UCP of Central Arizona and track record of organizational management, fiscal responsibility, and his mission driven focus will continue to build a strong future for UCP National. Most importantly, Armando is devoted to serving and empowering people with disabilities and he truly embodies everything our organization stands for.”

“It has been a privilege, honor and a true blessing to have served as the CEO of United Cerebral Palsy of Central Arizona for the past seven years,” said Armando Contreras. “I am abundantly grateful to have worked with purpose-driven, passionate staff that are committed to enhancing the lives of thousands of children, teens and adults by providing the resources necessary to build a life without limits! I would also like to express my sincere gratitude to Richard Forkosh for his executive leadership and exceptional integrity during his term as Interim CEO. I look forward to working closely with the UCP National Board, Affiliates and Staff to address the priorities at hand, set goals and build a pathway to sustainability.

As the CEO of United Cerebral Palsy of Central Arizona for the past seven years, Armando has increased net assets, built internal capacity, standardized business processes and enhanced the trust and communication in the organization. Contreras was instrumental in executing an agreement with Circle K, a major fundraiser collaborator of UCP’s for over 30 years, responsible for expanding therapy services for underserved children at the state of the art, UCP Downtown clinic, and diversified the organization’s grant and philanthropic base. Contreras has significantly increased UCP’s community awareness of the vital programs and services offered by UCP not only within the philanthropic circles, but also with public officials and key stakeholders in the disability community. Today, UCP of Central Arizona is one of the most highly respected agencies in Arizona serving children, teens and adults with various disabilities.

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About United Cerebral Palsy:

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 70 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit .

What You Need to Know About College as a Student with a Disability

The transition from high school to college can be both a scary and exciting time for every student. College is a whole new world, and unlike anything most students have yet experienced.

 

Before heading off to college, students have questions and concerns about their future. Most students probably wonder about their major, whether they will like the school they have chosen, and what their new friends will be like, but for students with disabilities, the questions can often be a little more complicated.

 

Students with disabilities may wonder about accommodations, accessibility, services and supports, and getting help with everyday needs. And these questions may not be easy to answer.

 

As someone who’s a former college student, and an individual with a disability, I wanted to share some of the things that I wish I had known freshman year in hopes that it may make your transition a little bit easier.

 

Self Advocacy Is Key:

Growing up, it was typically the responsibility of your parents, teachers, or other administrators to make sure you got the accommodations and supports you needed to be successful in school. But, in college, it becomes primarily your responsibility.

 

Self-advocacy is always important but becomes especially essential when navigating college. College is often the first time students have lived away from home, and it is important to remember that you are your own best advocate: there are lots of supports in place to help you be successful, but you have to be proactive and reach out so that the people around you know what you may, or may not need.

 

Most schools have Offices or Departments of Disability Services in place to help students with disabilities get the accommodations they need, such as note-taking support, extra time on exams, or any other reasonable academic accommodation, but nobody from the office is going to seek you out, especially if they don’t even know you’re there.

 

Make a point to become familiar with the services and supports that exist on your campus. Talk to the disability support staff to work on a plan for your accommodations to help ensure success from day one. You are in college now and, like your peers without disabilities, there are still people there to help you, but for the most part, you are in the driver’s seat now!

 

The Laws Are Different:

K-12 education for students with disabilities is mandated under the Individuals with Disabilities Education Act (IDEA), this means that students with disabilities are entitled to public education and that it is the responsibility of the school to see that all students are getting an appropriate education. Colleges don’t fall under IDEA, and therefore, are not required to make accommodations to the same degree as the public school system.

 

In college, students with disabilities are protected from discrimination, such as inaccessibility of buildings, under the Americans with Disabilities Act (ADA). Schools must provide reasonable accommodations such as notetakers or extra time on exams, but they don’t have any obligation to modify coursework to accommodate students with disabilities or provide additional supports such as assistance with personal care or activities of daily living to ensure a student is successful.

So, if you are, for example, a wheelchair user who needs help to get in and out of bed or perform other daily activities, the ADA requires your school to provide you with an accessible dorm room, but there is no legal obligation to provide you with an assistant or other types of personal care support.

 

This is important to know because it means that you will need to set up the supports you need on your own before you head off to school. Some schools have programs to help students with personal care needs, but this is not a requirement for all schools. Look into what your school offers to figure out what kind of supports may be available.

 

For more information about the difference in laws governing K-12 education and college check out the resources below:

 

https://umaine.edu/disability/accommodations-high-school-vs-college/

 

https://www2.ed.gov/about/offices/list/ocr/transitionguide.html

 

https://www2.ed.gov/about/offices/list/ocr/docs/auxaids.html

 

 

It’s Okay to Reach out for Help and Support:

If you’re feeling overwhelmed, or struggling more than you thought you would, there is absolutely no shame in asking for help. Mental and emotional well-being is just as important as physical health, and academic support.

 

Most colleges have a variety of services to support students from health centers, to counseling and other mental health services, and wellness programs, in addition to academic supports. Take advantage of the support and community that exists around you, and don’t be afraid to reach out.

 

Additionally, there are lots of groups and activities on college campuses, and many colleges even have organizations run by and for students with disabilities. These organizations may or may not be support oriented. Many of them may just be social groups, or groups focused on advocacy and activism.

 

Whether or not they are disability focused, student organizations and extracurricular activities can be another great place to find support in college.

 

 

Transition Is Not One-Size-Fits-All:

Everybody is unique, which means that everyone’s experience in transitioning from high school to what comes after will look, feel, and be, very different. Whether you’re planning to go to school far away, attend college close to home, or do something else after high school, it’s important to remember there is no right way to transition from high school to beyond.

 

Whatever you decide to do after high school graduation, focus on making sure that it’s the right option for you, rather than worrying about whether it’s what other people expect.

 

For more information you need to know,  check out the topics below:

What You Need to Know About Preventative Care and Disability
What You Need to Know About Sexual and Reproductive Health and Disability

UCP Expresses Concerns About American Health Care Act of 2017

Last Thursday, Members of the House of Representatives passed, by a narrow margin, H.R. 1628 (the American Health Care Act of 2017, or AHCA for short). United Cerebral Palsy, along with our colleagues in Washington, expressed concerns about the bill in its current form (as well as previous proposals that were circulated).

 

We joined coalitions focused on the preservation of coverage for individuals with pre-existing conditions, coverage for rehabilitative and habilitative services, and protecting Medicaid. We also took part in advocacy efforts with the Consortium of Citizens with Disabilities, a coalition of 100 national disability organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration, and inclusion of children and adults with disabilities in all aspects of society. In short, we are not alone in our concerns and we will continue to work together to fight this harmful bill.

We share the concerns many of you have voiced to us about the lack of review by the Congressional Budget Office of this latest bill, and the potentially devastating consequences the House bill as written could have on the 175,000 families served by UCP’s affiliate network (and really all individuals with disabilities who rely on Medicaid for health coverage and/or long-term services and supports).

We are hopeful that as the Senate deliberates, more information about the projected impact of the House bill will become known and that the Senate will not pass a bill that would bring harm to our community.

Senators need to hear from constituents, and we hope you will tell your story. To learn more about UCP’s public policy work and to get involved, please visit http://ucp.org/what-we-do/public-policy/

Transition Is…

 

Sometimes, unexpected or scary but also real and exciting

 

There are specialty clinics and hospitals throughout the country to address the unique needs of children with disabilities like cerebral palsy, but the same is not true for adults. Once people with disabilities reach the age of 18 or 21 they often have to stop seeing their pediatric providers, only to find there is no adult provider to take their place.

 

This is a major issue that affects young adults and adults with disabilities throughout the country, and contributes to a range of health inequalities and other issues. As we have addressed before, transitioning from pediatric care to adult care can be particularly difficult if your new doctor has little to no familiarity with disability.

 

Adults with disabilities need access to the same care as other adults, but they also need providers who are familiar with the unique needs that may come along with disability, and that is when young adults with disabilities can feel as though they’ve entered a void. However, one UCP affiliate is working to bridge that gap in a particularly creative and comprehensive way.

 

UCP of Minnesota/Gillette Specialty Children’s Hospital is the home of Gillette Lifetime, a clinic for patients with lifelong disabilities such as cerebral palsy and spina bifida who are ages 16 or older.

 

Kathy Lindstrom, an Advanced Practice Registered Nurse, at the Lifetime Clinic, says it grew out of an unmet need in the community.  Lifetime Clinic’s Transition Program started as, “a grassroots movement put together based on patient needs. “

 

Kathy Lindstrom Advanced Practice Registered Nurse, at the Lifetime Clinic

Kathy Lindstrom Advanced Practice Registered Nurse, at the Lifetime Clinic

 

 

Easier, with the right resources and support

 

The services at Gillette Lifetime Transition Clinic merge medical needs with the unique psychological and social needs of transition-aged young adults with disabilities. As Lindstrom explains “everything seems to change when patients reach the late teenage years; it’s not just medical, but in all aspects of their lives.”

 

Lindstrom says, “Legal decision making becomes an issue, [so does vocational] planning, post high school planning and discussions about future living arrangements.  Parents are bogged down with meeting the challenges of daily life, and sometimes it can be hard to develop a vision for the future… and so transition sneaks up on families.”

 

Parental involvement in the process often shifts at this stage, so it’s also important to prepare both parents and young adults for this change.

 

Transition is not a simple process that happens overnight, or automatically, on a patient’s 18th birthday. Lindstrom understands that it can be hard for patients to come to the clinic for the first time, as many of them have had the same providers for their entire lives, and it can be hard to let go.

 

Lifetime makes this transition a little bit easier by allowing patients to transfer some care to adult providers, while continuing to collaborate with other specialty providers for other aspects for a period.

 

During their first visit to the clinic, patients meet with Lindstrom and her colleagues to discuss transition, and outline the issues that are most important to them. These appointments are conversations, not exams, and take place in a conference room, as opposed to an exam room. The appointment gives patients, and their families, an opportunity to discuss any questions or concerns they may have, and to get a feel for the services available at Lifetime.

 

 

About choices, and coordination

 

Lifetime is focused on specialty medical needs, and is not a primary care facility. Lindstrom offers the following advice to any individuals with disabilities looking for primary care providers:

 

  • Meet with the family Primary Care Provider (PCP) and talk about the potential of becoming a patient. If the doctor already sees the rest of the family, they might be a good start for patients with disabilities as well. She encourages patients to integrate into their family’s practice whenever feasible.

 

  • Arrange an advanced meeting with the PCP and see how accessible the facility is before becoming a patient in the practice.

 

  • If at first you don’t succeed, try try again. Lindstrom cautions that you may not click with the first provider you meet with, but that doesn’t mean you won’t find somebody who works for you.

 

  • Your insurance will affect your options for a PCP, so remember to check first to make sure your preferred provider is covered!

 

Lindstrom also encourages primary care providers to connect with a patient’s specialty care providers. Gillette operates a telehealth triage line for all patients and their providers, regardless of age. If a primary care provider is unsure of how to treat a patient, they can reach out and communicate with other members of the patient’s care team.

 

In addition to medical care, Gillette Lifetime supports patients with the social aspects of transition such as recreation, community integration and helps prepare them for changing relationships with their family and friends, even giving them space to talk about the potential of romantic relationships.

 

Transition is difficult for every young adult, but when you have a disability, you may not know where to go, and you may have a unique set of questions that you feel like no one can answer, which is why transition clinics like Gillette Lifetime’s Transition Clinic are so important.

 

Learning more

 

There are several clinics that specialize in current medical recommendations for young adults with cerebral palsy throughout the country.

 

If you are located outside of Minnesota or the Midwest, and would like to see if there is a transition clinic near you, please be sure to check out our latest guide on healthcare for adults with cerebral palsy and related disabilities for clinics and additional resources that may be helpful in the transition from pediatric to adult health care.

 

Patient with a practitioner at the Lifetime Clinic

WineBev Creating Opportunity to “Work Without Limits”

The Napa Valley is known for gorgeous weather and of course for wine. UCP’s affiliate in the Napa Valley area, UCP of the North Bay, works to bring together the wine industry and individuals with disabilities. WineBev Services began in 2007 and is helping to acknowledge the need for labor in the region, while opening doors for more accessible and competitive employment for people with disabilities. “It was a natural fit given the area,” says Mike Lisenko, President of Business Operations for WineBev.

 

WineBev works with around 15 to 20 wineries in the area at any given time during the season. They currently employ 115 individuals with disabilities, working in all areas – from packing to fulfillment. Potential employees are referred to WineBev from the local regional center in Napa, which helps to pair individuals with providers in the community. Candidates go through a job skills training course before finding the area that best suits their skills. WineBev provides both community-based and supportive employment. They also work with the the hospitality industry in the area, giving greater flexibility to area employers and finding roles that best suit each individual employee’s strengths.

 

WineBev estimates that nearly 200 individuals have come through the program, with several finding employment on their own after their time there. At UCP of the North Bay, living a “life without limits” plays a role in every aspect of life – both work and play. At WineBev, “Work Without Limits” is more than just a tagline – it’s a purpose and flows through every facet of WineBev, from monitoring to packing, to creating employment opportunity for all.

 

Special thanks to Mike Lisenko, President of Business Operations for WineBev.

 

For more information on WineBev, please visit www.winebev.com.

 

To find out more about UCP of the North Bay and their programs, visit their website at http://ucpnb.org/.

 

UCP of Michigan Staff Invited to Attend Meeting Called by The Pope

Special thanks to Glenn Ashley, retired staff from UCP, for his assistance in working to help put this post together. 

UCP of Michigan’s Public Policy Specialist, Barb Valliere, was invited to attend the U.S. Regional Meeting of Popular Movements (RMOPM), which ran from February 16-19 in Modesto, CA.Part of international movements called by the Pope, the meeting in California brought together nearly 700 leaders from clergy members to grassroots leaders to provide input on a variety of social issues, including: job access and inclusion for people with disabilities, environmental issues, and racism. This meeting was the third in a series of international meetings (the previous two were held in Rome and Bolivia) aimed at bringing together members of the clergy and grassroots activists. For Barb, while the journey to California marked her first time on a plane, as Catholic woman with cerebral palsy it was an opportunity she could not pass up.

Ms. Valliere was one of three people invited from the Lansing, MI area to attend the meeting. Her invitation was a result of her leadership and work in community organizing efforts at the state and national levels. Initially, no one from the area was scheduled to speak, however, an issue with accessibility changed all of that. After requesting to be put in an accessible room, Barb was put in a room that was not accessible for her. The conference organizers were able to rectify the problem and accommodate her with another room. RMOPM asked her if she would like to address the entire assembly at dinner about the problem and her experience as person with a disability.


In her remarks to the assembly, she emphasized the importance of civil rights for people with disabilities. Attendees were reminded that when they plan events and invite people, to make sure to take care of their needs and have the event accessible to all, and to not assume that a space is accessible on word alone. She also encouraged other individuals with disabilities to advocate for yourself to ensure that your needs are met. Ms. Valliere made her point in community organizing fashion, encouraging event participants to move deeper into a  discussion on access and issues that affect the disability community.

 

Information for the blog was taken from movimientospopulares.org‘s press release.

Jeffrey Cooper, Recipient of the Kathy O. Maul Leadership Award at 2017 UCP Annual Meeting

Congratulations to Jeffrey Cooper, President, and CEO of UCP of Central Pennsylvania on being named the recipient of the Kathy O. Maul Leadership Award at the 2017 UCP Annual Meeting in Nashville, TN!

Thank you for all of your hard work, leadership, and dedication to individuals with disabilities!

Jeffrey Cooper, President, and CEO of UCP of Cental PA with Interim CEO of the UCP national office, Rick Forkosh.

UCP of Greater Cleveland Client Shines On The Job and Stuns On the Ice

 

Sharita Taylor is a client of UCP of Greater Cleveland. Sharita has autism, and first came to UCP in October 2009 because she was looking for job opportunities when she graduated from high school. Sharita’s story has a little ‘twist.’ When she’s not working, she’s shining on the ice and is heading to Austria for The Special Olympics World Winter Games!

Sharita Taylor on the ice. [Image description: A young African-American woman in her mid-20’s, wearing a yellow and blue dress. She is wearing ice skates and her arms stretched out in a pose.]

Sharita has been a UCP-contract employee at a bank processing center in Cleveland, OH since November 2009. She works in various departments in the bank, such as statement preparation, lockbox department, and image retrieval. Of her job, Sharita says: “I love the atmosphere and I love the people here!” “They make me feel at home. I love my job too! It keeps me up on my feet!” She says her favorite job is delivering documents to other departments as well as meeting and talking to people outside her division. Sharita also enjoys helping the Statement Prep Department with mailings. Sharita says that jumping from job to job is challenging for her, but she just tells herself to focus. Her job has taught her that multitasking can be a positive thing.

While Sharita thrives at her job at the bank, she is also very interested in theater and hopes to one day have a job in that field. She is active in UCP of Greater Cleveland’s Career Exploration Program, which assists clients in exploring a variety of job fields to see where their true passion lies. Sharita also ushers at the Beck Center for the Arts, a local visual and performing arts center.

When Sharita isn’t working or volunteering, she is an accomplished level-five figure skater, along with her twin sister Shaye. They both became involved in figure skating through the local Special Olympics chapter in Ohio. According to the U.S. Figure Skating Association, a level five figure skater has mastered basic figure skating skills such as a beginning spin and a hockey stop. In an interview with ABC News 5 in Cleveland, Sharita was the only athlete from Ohio invited to participate in the World Games. She will be participating in both figure skating and ice dancing in Austria.

 

UPDATE: Sharita Taylor brought home the Bronze medal in Ice Dancing and came in sixth place in figure skating singles in the 2017 Special Winter Olympic games in Vienna, Austria. Read More (ideastream.org)

 

 

To find out more about UCP of Greater Cleveland, you can visit their website here.

 

For a schedule of events for the 2017 Special Olympics World Winter Games, click here.

Changing Spaces Aims to Bring Access and Dignity to a Universal Experience

Nobody should have to lay on the floor of a public restroom. While this may seem obvious for some, individuals with disabilities and their families are not always afforded another option. This is because they are frequently faced with bathrooms being unsanitary, cramped, and often inaccessible.

Society has acknowledged the urgency for coat and purse hangers in bathroom stalls to maintain the hygienic safety and convenience for the individual using the restroom, however, often it seems that the same thought has not been considered for some individuals with disabilities. Many times, their caregivers have to change individuals on bathroom floors because there is no other option: the only changing table in most bathrooms is meant for babies. This is not only unhygienic, but also undignified.

Even if toilets are deemed accessible, many times they do not have necessary items for many individuals such as a lift, changing table, or an accessible and supportive toilet. This may fully prevent some caregivers from being able to provide adequate toileting care. Common and important activities such as visiting family or traveling outside the home may become a truly daunting logistical challenge.

Individuals with disabilities and their caregivers are working at the state level in Georgia (Changing Spaces GA), and in other places across the world, to improve public restrooms so that they are accessible and dignified for all methods of toileting. Advocates have two very clear solutions: rather than only having baby-sized changing tables, adult-sized changing tables would be suitable for all age groups. Furthermore, a ceiling hoist would actually reduce the risk of injury when lifting people onto a table, and it does not take up any extra space in the stall (you can view the video from Changing Spaces GA here).

In a society where individuals with disabilities still experience many barriers, being able to change in a toilet stall with dignity should not be another problem that individuals have to face. Changing Spaces is more than a campaign for hygiene, it is about dignity for the individual and those who love them. It is also about providing individuals with disabilities and their caregivers access to a space that has just as much access as for anyone else, allowing them to live life more freely and without barriers; and most importantly, letting them be who they want to be.

To learn more, visit Changing Spaces GA or follow along with the discussion on social media using the hashtag #OFFTHEFLOOR.

Thoughts on the Future of Healthcare

This blog was written from the personal experience of UCP’s Winter Intern surrounding the future of healthcare. This post is intended to express their personal thoughts and experiences. 

On February 7, 2017, I had the opportunity to attend my first press conference as United Cerebral Palsy (UCP)’s programs and development intern. The conference was held by the Committee on Education & The Workforce at the U.S. Capitol. The speakers included several Members of Congress, as well as school nurses and parent advocates. The experience was unforgettable, marking the first time I actually got to witness what goes on behind the scenes of health policy.

As an aspiring primary care physician, health care policy has always meant more to me than simple legislation. When policy changes are made, it directly impacts how doctors can perform their care and how patients can access it. I think it is extremely important that people understand and take charge of their own health, and this is made possible through expansions in health education and health access. Being at the Capitol, and feeling immersed in the actual political process with regards to health, showed me how important it is to continue advocating for these goals– and for my future patients.

One of the stories that particularly touched me at the event was that of parent advocate Anna Crone. She spoke to the room about her daughter who was born with type 1 diabetes. Part of her treatment requires receiving daily insulin injections, and having her finger pricked up to 10 times a day to check her blood glucose levels. In 2012, before the ACA was fully implemented, Crone’s husband had lost his job and was attempting to shop for private insurance. However, he was unable to find anything due to the fact that most insurance companies denied coverage at any cost for those living with pre-existing conditions. He was eventually able to find a job and get back on private insurance, however the family said they felt a significant ease of mind knowing that their daughter would never fully lose coverage thanks to the ACA.

From this story, along with others, I began to truly understand the degree to which the ACA has impacted millions of Americans. As in the case of Anna’s husband, life may get in the way when one least expects it, and it is important to know that you or those you love will still be protected. I am so grateful to have had the opportunity to better understand the complexities of our government; and, I know that this will serve to make me a better health advocate for not only individuals with disabilities, but for all.