1 of 24 Welcome Letter

Dear Colleague,

United (UCP) is pleased to provide you with this reference guide outlining the opportunities of engagement with UCP. Contained within these pages, you will find a brief history of the organization and a summary of the benefits and services you will receive as a member of the UCP network.

What cannot be put into words, however, is the spirit of UCP and its affiliates, who serve more than 176,000 people with every day. While there are many different organizations serving people with disabilities, I have been fortunate enough to see firsthand the entrepreneurial leadership our network provides, the deep commitment our affiliates have to advancing the civil rights movement for people with disabilities and the innovative approaches UCP affiliates take to not only solving problems today but to revolutionizing care and services to ensure that people with disabilities participate as full citizens of our society well into the future.

UCP believes that people with disabilities should, can and must be afforded a life without limits. We are grateful to our committed network of leaders who are leading the way in realizing this mission.

Sincerely,

Stephen Bennett President & Chief Executive Officer

UCP President & CEO Stephen Bennett speaks at celebration of the 20 th anniversary of the Americans with Disabilities Act & 15 th anniversary of Discrimination Act (UK) at the British Embassy in Washington, DC, July 2010

2 of 24 Overview & Mission

Founded in 1949, UCP educates, advocates and, provides support services through its affiliate network, to ensure a life without limits for people with a spectrum of disabilities.

The mission of United Cerebral Palsy is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network .

This is achieved by providing services and support to more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact system change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions of people living with disabilities and their families.

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 continues to push for the social, legal and technological changes that increase and independence, allowing people with disabilities to achieve their maximum potential.

National Office The UCP national office in Washington, DC supports the affiliate network; advocates on behalf of people with disabilities; advances federal disability public policy; provides public education and outreach; provides consulting assistance on various issues – including financial assessments, business strategy, mergers and social enterprise creation – through expert teams from across UCP’s network and beyond; and pursues forward-thinking programs including its signature Life Without Limits initiative and Public Education & Outreach campaigns.

Contact Information, Leadership & Media • Contact: 1825 K Street, NW, Suite 600, Washington, DC 20006 800-872-5827, 202-776-0414, [email protected] , www.ucp.org • Leadership: Staff: ucp.org/about/national-staff Board of Trustees: ucp.org/about/board • Bruce Merlin Fried, Chair, National Board of Trustees • Stephen Bennett, President & Chief Executive Officer

• Media: Publications: ucp.org/media/publications Social Media: ucp.org/media/social-media • Twitter: @UCPnational (twitter.com/ucpnational) • Facebook: facebook.com/unitedcerebralpalsy • YouTube: .com/unitedcerebralpalsy

3 of 24 Affiliate Services

A Global Network of Community Service Providers UCP affiliates are leaders in providing innovative programs and services to people with a spectrum of disabilities on a daily basis. We make a difference not only in the lives of the individuals we serve, but also in the communities of which we are a part.

As one of the nation's leading health charities – serving and advocating for the more than 54 million Americans with disabilities – UCP is aware that organizations providing services for people with disabilities are facing as competitive and challenging an environment as ever before. UCP understands the landscape that service providers face today, and we are positioned to assist organizations to increase services to more people, enhance management and governance, pursue additional opportunities and generate new revenue.

UCP is known for its service-based, affiliate-focused structure. Our strength as a national network is because of our affiliates, which are entrepreneurial and constantly growing to serve the needs of their communities. Our future lies in leveraging innovation to fulfill the promise of a life without limits for people with disabilities.

For people with disabilities: • The civil rights movement is not over. • Life should be without limits. • UCP is committed to innovative solutions today.

We serve a population who is the most dependent on Medicaid and Medicare, and we have top tier expertise in using those funding programs to help improve people’s lives. Our voice should be prominent as changes to those programs are discussed in the context of federal deficit reduction. But we are not the only provider in the nation with expertise in this area and we should put ourselves in a position to learn from other creative and innovative organizations.

This requires affiliation with a national organization. And there is only one national organization that I believe is a good match for PROVAIL given our mission, our history, the population we serve, the scope of our work and our aspirations for growth—UCP. I see national affiliation as an investment in our capacity for success and I believe we will see a strongly positive return on that investment.

--Michael Hatzenbeler, President and CEO, PROVAIL, an affiliate of UCP

Programs, Products, Services & Benefits UCP affiliates receive a number of benefits as part of the UCP network, including:

• Discounted rates for a variety of business products and services from our partners, including a group purchasing plan, business insurance, unemployment and HR Services.

o UCP Purchasing Point : This program offers affiliates the opportunity to save 10-40% on products and supplies like food, cleaning supplies, express delivery, office supplies, etc. Access is afforded to all UCP affiliates. The online portal at www.ucp.org provides easy access to find vendors and for instructions about requesting participation from vendors in this special program (“signing up”). It also offers a social network of peers to share knowledge, ask questions, rate vendors, etc. You can use the feedback form link (at the bottom of every page) if anything is unclear, not working properly, or seems incorrect.  New users can sign up with the access code ucp1949

4 of 24 o 501(c) Agencies Trust : This national agency helps nonprofits reduce unemployment costs, complete claims management, a human resources hotline and member agency staff training, stop loss insurance, and building member reserve accounts. All of these are aimed at keeping unemployment costs at the lowest level possible.

• Technology & Support : UCP offers extensive technology & support resources, including template websites, free web hosting, a logo generation tool and IT expertise.

• Bellows Fund : UCP administers a multimillion-dollar fund to be used to provide devices to individuals with disabilities who are in financial need. As an affiliate, you are qualified to receive funds to purchase assistive technology equipment and devices for a person in need in your community. Allocations are available on an annual basis. The application is a one-page form and can be found on the UCP website. The Bellows Fund Committee reviews all applications and processes the requests quickly.

“When Tosh received his own iPad from the Bellows Fund his eyes lit up, and he said, "It's mine?" This communication is a miracle as this nine year old boy of Haitian (immigrant) parents, was non-verbal two years ago when he started at Cypress School. When Tosh came to the school he was still in diapers, could not sit at his school desk or participate in any pre-school curriculum activities, and was aggressive with other students.

Tosh began using an iPad with his Speech Therapist once weekly in November 2011, and he began making progress in speaking and participating in reading and math software programs. Cypress School / UCP of the North Bay applied for the Bellows Fund to support Tosh accessing language and academic activities every day.

Since beginning to use his own iPad, Tosh has learned to use the Storyboard application and is writing short stories based on his social activity of the day. He can even read his own stories to a classmate now. Tosh's dad had tears in his eyes when our Teacher Jennifer Finney told him that Tosh had independently written "the girl is pretty." on his iPad.

The Bellows Fund has made a big difference to Tosh's motivation, participation and learning!

-- Laura Briggin, Cypress School / UCP of the North Bay

5 of 24 • Ewing Housing Loan Program : UCP administers a short-term, low-interest loan program for affiliates to construct or rehabilitate/modify accessible housing for people with disabilities. The funds are intended to assist affiliates with costs until long-term financing is secured.

“UCP of Georgia and UCP of South Carolina have both been fortunate recipients of Ewing Trust funds to develop housing options for those leaving state operated institutions. The application and approval process is smooth and straightforward. Without access to this sort of capital we would have missed opportunities to provide much needed community based supports.”

-- Diane Wilush, Executive Director, UCP of Georgia

• Governance : UCP provides affiliate support in establishing, complying and adhering to good governance standards. Visit ucp.org/pages/for-affiliates/governance for additional resources.

• Resource Development : Several national partnerships provide UCP affiliates with easy-to-use fund-raising opportunities. More information is available in the Development section of this guide.

• Special Reports : UCP produces special reports like the UCP Affiliate Resource Guide of replicable best practices on programs, fundraising and social enterprises and The State of Disability in America to educate internal and external audiences on the latest disability-related news and information.

• UCP Branded Materials : UCP provides special marketing and branding materials throughout the year. More information is available in the marketing and communications section of this guide.

• Bequests & Planned Giving: UCP provides fundraising and development support for affiliates looking to establish planned giving programs. UCP also provides advice to affiliates on how to handle specific planned giving and bequest issues. When bequests or other donations are designated by a donor to be used in a particular geographic location, UCP works with its local affiliates to ensure that the donor's intent is honored.

“There is no doubt that our affiliate, UCP of the North Bay, has accomplished everything through the heartfelt generosity of a bequest. This gift was specifically named for UCP and our local region.”

--Margaret Farman, Executive Director, United Cerebral Palsy of the North Bay

Opportunities to Strengthen Through Networking & Engagement • UCP affiliates meet at Regional Administrative Councils (RACs) twice annually to discuss issues pertinent to affiliates located in four US regions. There RACs, include: North Central, South, Great Plains and West. Each RAC selects a chair that sets the agendas for meetings, and plans for content with input from affiliates. These affiliate-led gatherings provide an excellent opportunity to network with peers, problem solve, gather new ideas and seek professional support. Key organizational issues are vetted through the RAC system, and feedback that is essential to open network communication is fostered. In addition, there are opportunities to teleconference about pre- determined topics. The RACs also provide convenings that allow opportunities to provide input and direction on topics of mutual interest and expertise. In the past, they have included the following subjects: Research, Employment, Managed Care, Policy, Resource Development and Program Advancement.

“The opportunity to participate in our RAC (Regional Administrative Council) is one of great value. Not only are we able to keep abreast of what is going on in UCP, but we also pick up valuable information about what is happening in our industry in this part of the country. I think that this ability to more closely track external forces gives us an edge in developing strategy.”

-- Dom Stromquist, Executive Director, UCP of Nevada

• Leadership Briefings are held annually in Washington, DC primarily for affiliate executives and board members who are new to their positions in a UCP affiliate or are from an organization that is a new affiliate of UCP and to

6 of 24 the board chairs of those affiliates. This introduction to UCP provides new leadership with a chance to have a support network for success early in their tenure.

• UCP affiliate leaders, staff members and volunteers gather at an Annual Conference and meeting to probe the issues of the day, to further develop needed skills and to hold an annual business meeting of the organization.

• The Professional Council consists of five affiliate Executive Directors and serves as an advisory group of executives to UCP National’s President & CEO. The Chair of the Professional Council has a voting seat on the UCP National Board of Trustees.

Mission Driven, Business Focused

Today’s nonprofit business environment calls for strong leadership and management. Many UCP affiliates have reported a need for new skills, outside analysis and, in some cases, emergency assistance to get their businesses on track. As a response to this dynamic landscape, UCP created Mission Driven Business (MDB), a consulting arm of UCP national, that aims to take advantage of affiliates’ expertise by connecting professional staff at the national, state and local levels at a significantly lower cost than other consulting firms. MDB consulting projects can cover technical assistance and consultation, crisis and conflict resolution, resource development assessments and planning, information and resource materials, board and executive director orientation and training, volunteer development and new affiliate development. Additionally, peer-to-peer affiliate networking is enhanced through online and face-to-face programs.

We encourage UCP affiliates to request a bid from MDB Consulting any time they are contracting outside consulting assistance. In most cases, UCP can create a consulting team of experts that have dealt with your exact issue and save you significant dollars by staying in network.

Recent Projects: Business Consulting: Mission Driven Consulting has provided business case and business planning services for a number of affiliates. We assisted UCP of Maine to develop a monitoring technology that will lead to in-home and mobile monitoring for persons with disabilities and the aging population. For UCP of Southern Arizona , we have conducted a feasibility study for the creation of a gluten-free bakery employing people with disabilities. For UCP of DC and Northern Virginia , we are assisting in service expansion into new areas with new services. We also assisted UCP of Maine to adopt new tablet based technology that assists with the efficient delivery of in-home services and automates dispatch, reimbursement and tracks delivery of services.

Strategic Planning: For UCP of Greater New Orleans , Mission Driven Consulting provided a team of experts to guide their board through a new strategic planning process that identified three new business opportunities that could increase revenue and provide added fiscal stability to the affiliate.

Development: Mission Driven Consulting assisted UCP of Los Angeles to redesign their development and marketing department and to recruit a top-notch development director. For UCP of Arkansas , Mission Driven Consulting conducted a planning session and reorganization for their development efforts that created new development efforts and revitalized how development fit into the overall business model of the affiliate.

For more information, contact Anita Porco, Vice President of the Affiliate Network, at [email protected] & Steve Katsurinis, Director of Mission Driven Business, at [email protected] .

7 of 24 Public Policy

Advocating for Change at the Local, State & Federal Level

The national office presence in Washington, DC enhances the strength of the UCP network as the voice of our affiliates on the important public policy issues impacting those whom we serve across America. UCP is a central hub in the civil rights movement for people with disabilities, and its policy team pursues advocacy initiatives and participates in state and federal litigation of importance to those we serve.

Using research, strategic alliances and grassroots efforts driven by technology, UCP builds campaigns around important disability issues like Medicaid, disability voting issues and the Direct Support Professional crisis. UCP advances its advocacy by providing important and valuable information to its affiliates about accessing state and federal resources critical to people with disabilities and their families.

Products & Services • Policy Communications Toolkit: Created in June 2012, this policy focused toolkit aims to help UCP affiliates develop strong media outreach operations through strategic communications. It focuses on building and developing relationships with local media, how to effectively convey messages, establishing/ developing an effective communications plan, contacting local media, interacting with members of the media, writing a letter to the editor, writing an op-ed, securing an editorial board meeting, writing an effective press release, interacting with local/ state/ federal representatives, and communicating in a crisis.

• Grassroots Advocacy: UCP has significant expertise to advise affiliates on state-based grassroots public policy and lobbying. The organization utilizes some of the latest technology to mobilize its network of more than 40,000 advocates to address policy issues at the national and state levels.

• Support for Affiliate Lobbying: UCP arranges for visits with congressional representatives when affiliate executives and board members visit Washington, DC. UCP provides policy advice and support for affiliates as they deal with state-level issues.

"UCP provides critically needed support to affiliates regarding state fiscal concerns, and state and national policy issues. Since January, the national office has assisted Pennsylvania affiliates in setting up meetings with the Governor and his key policy aides; facilitated an affiliate video teleconference with the office of US Senator Bob Casey.; facilitated a crucial meeting between the national office of the Centers for Medicare and Medicaid Services (CMS), the regional CMS office, the PA Deputy Secretary for the Office of Developmental Programs, and UCP , the PA Arc, and the Disability Rights Network. Representation at the National Governor's Association level has also been available."

--Jeff Cooper, President & CEO, UCP of Central Pennsylvania

• UCP Washington Wire : Weekly policy news publication from Washington, DC, which provides a complete briefing of the week’s most important public policy topics.

• Public Policy Call-in “Radio Show”: UCP offers its affiliates and their staff exclusive, monthly, policy updates via conference calls. This affords local advocates an opportunity to have a deeper conversation on the issues and to brainstorm suggestions for advocating in their own community.

• Action Alerts: Periodic calls-to-action on important, time-sensitive issues before Congress.

8 of 24

• The Case for Inclusion : This is UCP’s annual report that tracks the progress of community living standards for Americans living with intellectual and developmental disabilities (ID/DD). It examines data and outcomes for all 50 states and the District of Columbia (DC), ranking each on a set of key indicators, including how people with disabilities live and participate in their communities, if they are satisfied with their lives, and how easily the services and supports they need are accessed. By taking these factors into account, UCP is able to develop a comprehensive analysis of each state’s progress or failures in providing critical services to individuals living with disabilities.

Since 2006, these rankings enable families, advocates, the media and policymakers to fully understand each state’s progress or lack of improvement, and help to protect successful efforts against unwise funding cuts, as well as guide future reforms to promote inclusion and enhance the quality of life for these, and ultimately all, Americans.

With the release of the 2012 report, data from all previous reports is available on UCP’s website using a robust new web module and design at ucp.org/public-policy/the-case-for-inclusion , where users can: • Compare state & national data • View state scorecards • Interact with the ranking map • See highlights of the 2012 report, top and bottom 10 states, most improved states and those with biggest drops, and facts about the best performing states • Advocate for areas needing improvement in states, and promote achievements that maintain high quality outcomes, like eliminating waiting lists and closing large institutions • Download all full reports

For more information, contact Connie Garner, Executive Vice President of Policy, at [email protected] , and Kaelan Richards, Senior Director of Public Policy Communications and Advocacy, at [email protected] .

9 of 24 Resource Development

National Relationships Create Local Benefits UCP provides opportunities for affiliates to enhance their funding from local franchise representatives and outlets of national corporate partners. Our team of fund-raising professionals expands the national corporate partner network by actively seeking to acquire new potential sponsors and to maintain and build existing sponsor relationships. UCP supports affiliates with materials to cultivate the art of acquiring sponsorships and to grow local sponsor programs by offering manuals, workshops, Annual Conferences and teleconferences.

Fund-raising Programs & Opportunities

Internet Contributions Donors can donate directly to a local affiliate through UCP National’s online giving form. Only those affiliates that are being hosted by UCP, or those that do not have their own online donation system, are listed. Donors receive an electronic acknowledgement and receipt at the time of their gift, and it is up to the local affiliate receiving the donation to personally follow-up with the donor. A list of donors is provided along with disbursement checks monthly, but affiliates may contact UCP’s Development office for a list of online donors to their affiliate at any time.

Direct Mail The national office has invested significantly in creating a national direct mail program designed specifically to find new donors for UCP. Each year more than 50,000 individuals across the country receive mail from UCP requesting support. Affiliates can request contact information of direct mail donors living in their respective zip codes, should they choose to contact these donors separately.

UCP Vehicle Donation Program Individuals can donate their vehicles through UCP’s vehicle donation program. UCP takes care of the entire process, from collecting and transferring the vehicles to auctioning the vehicle and processing the paperwork. The proceeds from auction sales benefit your affiliate. • How to get started? It’s free to sign up. Simply promote the vehicle donation program in your online and print materials. Contact Ron Farrin at 301-856-6340 or [email protected].

Corporate Partnerships

Circle K UCP national currently has a partnership with two Circle K regions: the Gulf Coast and Florida. Circle K convenience stores have UCP-branded canisters by the register that feature stories from local affiliates; customers can put money in the canister as they check out. Circle K regions also have large-scale fundraising events. • How to get started? If your affiliate is located in a Circle K region, checks will be automatically distributed each quarter. The program is coordinated and support by UCP National as a service to affiliates.

Ford Gum Ford Gum is a gum and gumball machine maker based out of Akron, New York. The philanthropically minded company maintains a corporate partnership with UCP and the Muscular Dystrophy Association and, among many other local organizations and events, donates 10% of their profits made at distributing locations to these causes. • How do I get started? If your affiliate is located in an area where Ford Gum products are distributed, checks will be automatically distributed each quarter.

HealthSouth HealthSouth specializes in rehabilitation services with more than 100 facilities across the US HealthSouth offers an employee-giving program, with proceeds benefitting UCP. • How do I get started? No sign-up necessary. Affiliates automatically receive checks.

10 of 24 Recycling Program/Planet Green UCP works with Planet Green to raise funds while helping the environment by recycling empty printer cartridges, old cell phones and small electronics. Affiliates can also work directly with Planet Green to raise money that directly goes to the affiliate. • How do I get started? 1) Visit planetgreenrecylcle.com and create a free custom site for your affiliate. 2) Encourage persons to fill a box (any size) with cartridges, phones and small electronics. 20 items can yield approximately $50. 3) Print free, pre-paid shipping labels online and mail the boxes to Planet Green 4) Planet Green inspects the items and sends payment to your affiliate.

Donate for a Cause Donate for a Cause (DFC) is a nonprofit organization that turns donated timeshares into revenue for charity. Interested timeshare owners call DFC’s toll-free number or access the DFC link on the UCP website to designate UCP as the sole benefactor of their donation. DFC appraises the donated timeshare values and redistributes 100% of the liquidated funds to the designated affiliate. If the donor does not designate a specific charity as the sole benefactor, the donations are placed in DFC’s general fund and redistributed to all partnered charities quarterly. • How do I get started? Promote Donate for a Cause in online and print materials, and encourage persons to donate their timeshares through DFC.

UCP Planned Giving Guide This UCP resource for affiliates is intended to provide a basic overview of planned giving with step-by-step guides for launching and maintaining a program. Because of the complex legal, tax and financial concerns involved with this advanced area of fundraising, this guide focuses primarily on wills and bequests. It includes methods for promoting and accepting gifts through an estate, as well as sample resources that can be adapted to your affiliate. The guide is available on the password protected affiliate resources site at www.ucp.org.

For more information, contact Giselle Pole, Director of Development, at [email protected] .

UCP Florida affiliates accepted a $332,000 check at UCP of Tampa Bay from Circle K’s Florida's FishStix event, an annual golf and fishing tournament, October 2011

11 of 24 Marketing & Communications

Harness UCP’s Name & Brand to Promote Your Affiliate Past studies show that UCP enjoys impressive 72%-unassisted name recognition with the public, media and policy makers. UCP builds on that by raising public awareness in providing products, tools and information to the general public, individuals with disabilities and their families and other agencies through UCP’s external communications.

Communications goals: • Raise awareness of UCP and its success working for and with people with a spectrum of disabilities; • Provide focused messaging that underscores that UCP provides supports and services beyond cerebral palsy; • Have audiences immediately defer to UCP when discussing disabilities (positive reaction; trusted resource; connector; innovative; leading civil rights movement specific to disabilities, technology and beyond).

Brand Name History & Value UCP’s Board of Trustees approved a policy in 2010 that provides increased flexibility for UCP affiliates. While UCP promotes strong standards as part of preserving the power of its brand for all affiliates, the policy also provides for co- branding, network affiliation, expansion, mergers and acquisitions, providing for allowances on a case-by-case basis. In addition, UCP’s name allows affiliates to benefit from bequests left to support the UCP network.

These guidelines are available in the UCP Brand Standards & Usage Guidelines. Any exceptions to these guidelines must be approved by UCP’s Senior Vice President of External Affairs before moving forward. If an affiliate is considering a change, all new proposals must be routed through the national office to jointly work together throughout the process.

UCP continues to offer affiliates customizable marketing collateral, which is intended to articulate the many facets of the UCP brand and help external audiences understand the concept that UCP serves people with a spectrum of disabilities; not just cerebral palsy.

UCP’s brand is a powerful tool for all affiliates. The national office is committed to providing tools that enhance that brand while creating awareness that serves UCP affiliates both from a communications as well as a financial perspective.

“Over the last five years, UCP of MetroBoston has been the beneficiary of at least a half dozen bequests that we believe are directly related to our name recognition. In examining our donor base, the bequests came from people who created wills many years ago and had little contact with the agency. Examining the other beneficiaries in the will showed a pattern of giving to well-established organizations in the Boston area with fairly well-known name recognition.”

--Todd Kates, Executive Director, UCP of MetroBoston

For more information, contact Michael Hill, Senior Vice President of External Affairs, at [email protected], or Lauren Cozzi, Director of Marketing & Communications, at [email protected] .

12 of 24

Marketing Products, Tools & Resources

• Brand Standards & Usage Guidelines

• Message Map to help affiliates tell the UCP story

• Multimedia offerings range from video public service announcements to promotional and informational marketing materials and photos

• Celebrity Ambassadors : UCP mobilizes its celebrity ambassadors wherever possible to participate in local and national events and advocacy efforts

• Toolkits aid in marketing, fundraising, policy communications, educational and advocacy efforts

• Internal communications platforms : Private, closed Facebook Groups -- UCP Network & UCP Policy Exchange -- created and designed for UCP affiliates to foster communications and encourage collaboration

• Regular phone and email communications with affiliate professionals

• UCP-authored external publications that reach various audiences o Full Spectrum, the UCP Newsletter : A monthly synopsis of the latest news about UCP and its affiliates worldwide o UCP SmartBrief : A weekly newsletter that brings important and timely news stories focusing on issues of transition for people with disabilities, advocates, UCP affiliates, and anyone looking for disability news and information. o Limitless, the My Child Without Limits newsletter : A newsletter geared toward parents and caregivers of children with disabilities (from the MCWL website &MCWL Support Community) o UCP Washington Wire : A weekly update on federal policy and positions impacting the disabilities community o Brave Kids newsletter : A monthly newsletter featuring news parents can use as children grow through childhood into teenage years.

• Social Media platforms are designed to strengthen, engage and increase UCP’s audience by educating the general public and partners; advancing the civil rights movement, and encouraging participation/dialogue to build UCP awareness. The UCP Social Media Toolkit provides the resources needed to best utilize social media for affiliates to engage with constituents, raise awareness, create centers of dialogue, fundraise and educate.

“Since 2000 we have received 10 bequests totaling $2.5 million because of the UCP brand.”

--Susan Schiller, Executive Director, UCP of Greater Cincinnati

For more information, contact Lauren Cozzi, Director of Marketing & Communications, at [email protected] & Alicia Kubert Smith, Communications & Social Media Strategist, at [email protected] .

13 of 24 Technology

Committed to Innovative Solutions Today UCP offers extensive technology & support resources, including template websites, free web hosting, a logo generation tool, and IT expertise. UCP’s technology team also provides answers to frequently asked technology questions in a private online forum.

Affiliate Template Websites Affiliates may elect to use a customizable template website, modeled on the national site at ucp.org . This can save affiliates thousands of dollars in design and consulting costs. UCP national’s technology team offers a beginning training and consultation and has created several easy-to-use You Tube video clips to help affiliate staff tackle any issue they wish with the website.

The national office can deploy a website for your affiliate.org domain name that is as easy to manage as a word processor document. In addition to simple content management on the websites, document, blog and calendar event management are easy to manage.

UCP Affiliate Logo Affiliates can create logos using the UCP Logo Generator Tool at http://logo.ucplabs.org/logo.php . The advanced interface provides the power and flexibility to generate a standards-compliant logo that fits affiliates’ needs. It also provides the ability to create and tailor the various layouts, file types, color formats (including greyscale), background colors, sizes and margins.

Customized Technology Solutions UCP’s Technology Team is available to assist with and recommend cost-effective solutions to almost any affiliate technology related issue, especially in the area of software applications. UCP has preferred relationships with certain proprietary vendors and extensive knowledge of open source software solutions, like Inkscape (inkscape.org ) and GIMP (gimp.org ). UCP is available for one-one-one tech consulting for its affiliates.

For more information, contact Marc Irlandez, Director of Technology, at [email protected] .

14 of 24 Public Education & Outreach

Connecting People to the Information They Need UCP’s knowledge of disability issues has been accruing for more than 60 years. Connecting individuals and families with the resources and services they need helps fulfill UCP's mission of advancing the independence, productivity and full citizenship of people with a spectrum of disabilities. In 2011, UCP transformed its Information and Referral Program into a modern Public Education & Outreach (PEO) effort. UCP’s public education efforts include two primary components:

• Public Information Resources: UCP provides individual State Resource Guides for all 50 states, a toll-free phone hotline for questions in the disability space, as well as a “One Stop Resource Guide” and extensive resources on the web. These are all resources that affiliates should take advantage of using to round out community resources.

• Public Education Campaigns: The heart of UCP’s new PEO effort is four Public Education Campaigns, each of which would partners with affiliates and other organizations to create a coalition of resources on each topic. Each campaign is designed to serve people with disabilities and their families while opening up new channels for discussions, solutions and support. Collectively these campaigns help UCP better position itself as a leader in the disabilities arena by harnessing the talents of our affiliates and convening partners to advance a core area of focus for UCP.

15 of 24 UCP Public Education Campaigns

• My Child Without Limits : This robust tool for parents and caregivers of children ages 0-5 now has a Spanish language version and Read Speaker, a tool that helps those with reading difficulties or those on the go to access the site. New subscribers to Limitless , the My Child newsletter can now also sign up to receive a Parent Pack. A national marketing campaign to pediatricians is an initiative for the rest of 2012.

• Brave Kids : Brave Kids was founded by Kristen Fitzgerald after the loss of her two children to catastrophic illnesses. In 2011, UCP took over the website, which serves children with disabilities or chronic/life threatening illnesses by providing information and resources on numerous medical conditions such as genetic diseases, autism, cancer, cerebral palsy, ADD and many more. In the coming months, UCP will debut a new platform providing the information, resources and support for the targeted age range of 6-16 that Brave Kids visitors have come to trust and rely upon.

• My Life Without Limits : UCP’s new partnership with the National Youth Transitions Center has inspired the organization to create a new online resource for people with disabilities, ages 17-30. In this forum, UCP will explore transition issues including employment, housing, exploring higher education, etc.

• Siblings Initiative : Siblings play a major role in the lives of people with disabilities, but relatively few supports exist for this part of the family. UCP will be developing a comprehensive new online resource, which will be combined with new research and convenings, to bolster this important part of the family.

Any UCP affiliate that has an interest in partnering with UCP national on these projects should contact Lara Terrell, Manager of Public Education and Outreach, at [email protected] .

16 of 24 Life Without Limits

Empowering People with Disabilities to Build a Better Future Life Without Limits is a national initiative launched by UCP to empower people with disabilities to envision and build a better future for themselves, their communities and the world at large. UCP’s Life Without Limits initiative (LWL) was formed in 2007 as a platform from which people with disabilities, their families, and disability advocates could engage corporations, organizations and individuals to build sustainable communities that draw upon the disability community’s untapped strength.

Background LWL was conceived in 2004 in response to the realization that goals set many years ago that led to both the deinstitutionalization of many individuals with disabilities and the passing of the Americans with Disabilities Act have not been fully realized. That there is a long way to go before individuals with disabilities are fully integrated into all aspects of society motivated UCP to jump-start a far-reaching dialogue about the ways in which people with disabilities could become fully integrated in society and live life without limits.

Early accomplishments of the initiative include far- reaching focus groups throughout the network that encouraged discussions around the opportunities and obstacles facing people with disabilities and the creation of a custom forecast map designed by the Institute for the Future that identifies future forces that are likely to have major impact on individuals with disabilities over the next decade.

In April 2007, the Life Without Limits National Visioning Sessions and 2007 UCP Annual Conference convened in Orlando, Florida. Conference participants had the opportunity for in-depth review and discussion of future forces that are likely to have major impacts on individuals with disabilities. The opening address highlighted the waves of change that will shape the lives of people with disabilities over the next decade. How these same people will use their abilities to explore the emerging edges of what it means to be human was also discussed.

During the conference, UCP convened three visioning sessions to identify key elements that should be included in a new vision of the future for individuals with disabilities. The following key elements were identified:

• Believable Hope • Navigating the World Across Generations • Universal Access • Agile/Potent Networks • Meaningful Employment • Community Not Government

17 of 24 Learning from the Past, Building for the Future Now, nine years later, UCP is again refocusing its LWL initiative, recasting LWL into three key efforts: research and exploration, technology and innovation, and programs and events that will help change society.

Research& Exploration (ThinkTank)

Programs& Technology Events &Innovation (Institute) (LifeLabs)

LWL initiatives are designed to foster societal change and progress for people with disabilities. In each focus area, UCP endeavors to create structures that allow people with disabilities to harness their own future. LWL projects operate through dynamic partnerships with established organizations and industry as well as with do-it-yourselfers and self- advocates, recognizing there is strength in networks as well as through individual creativity.

The objectives of LWL include:

• Shining a spotlight on key issues impacting people with disabilities and using this information to advocate for dynamic changes in society that advance the civil rights movement for people with disabilities; • Improving the lives of people with disabilities by harnessing the latest innovations in technology to increase their access to the wider world and marketplace; • Creating a forum for increased learning that strengthens service providers, advocates, medical researchers and self- advocates to create broad changes in the way that society interacts with people with disabilities.

Any UCP affiliate that has an interest in partnering with UCP national on these projects should contact Michael Hill, Senior Vice President of External Affairs, at [email protected] .

18 of 24 UCP Moments of Pride & Advances

The civil rights movement for people with disabilities has made substantial progress for people with disabilities through the enactment and implementation of landmark legislation. UCP continues advocacy for full civil rights through its policy efforts. An index of key pieces of legislation is online at ucp.org/public-policy/landmark-legislation . Other points of pride include:

1940 Leonard and Isabelle Goldenson work with Mary Lasker, Anna Rosenberg and Florence Mahoney to help establish the National Institute of Neurological Diseases and Stroke , part of the National Institutes of Health (NIH) . The Goldensons are each appointed to four-year terms on the advisory board for the Institute.

1945 An advertisement in the New York Herald Tribune seeking parents of children with cerebral palsy interested in improving services for their children, generates 350 responses from families in New York City and the surrounding area. Parents of children with cerebral palsy came together looking for help, answers and information. The spirit of that watershed moment has permeated UCP’s policy efforts since the organization’s inception.

1948 Known currently as United Cerebral Palsy, the organization is incorporated as the National Foundation for Cerebral Palsy. 12,000 people assemble from the US, Canada, Europe and South America to attend the first Cerebral Palsy Conference .

1949 The name of the organization was changed to United Cerebral Palsy, and UCP affiliates were formed across the nation.

1950 The first UCP telethon, called "Celebrity Parade," is held in Chicago. It lasts 15 hours and raises a total of $972,106.

1950s-60s UCP is a voice for issues important to people with disabilities, by raising awareness about horrific living conditions in state institutions, leading to the liberation of thousands of people with disabilities from institutional living nationwide. Not only did UCP shine a light on this injustice, its affiliate network created new housing and support solutions to ensure greater independence and full citizenship for people with disabilities. Raising awareness continued using the voice of UCP founders through ABC’s broadcast telethon.

1969 Research funded by UCP isolates the rubella virus (German Measles) and develops a vaccine for the disease.

1973 Isabelle and Leonard Goldenson, along with Dr. William Berenberg and other doctors and scientists, address the Brademas Congressional Appropriations Committee, securing public funding for orthopedic equipment and making public buildings, telephones, transportation and parking spaces accessible to people with disabilities in the US.

1988 UCP plays a significant role in the passage of the Technology-Related Assistance Act , creating new incentives for states to improve access to assistive technology for children and adults with disabilities.

1990 UCP is a major leader in the passage of the Americans with Disabilities Act (ADA) which, for the first time, extends basic civil rights protections to persons with disabilities in the areas of employment,

19 of 24 transportation, public accommodations and telecommunications. UCP continues to be heavily involved with passage of subsequent amendments to the ADA, after 1990.

1993 The first National Invitational Colloquium on Aging and Cerebral Palsy is held in conjunction with UCP's Annual Conference in Washington, DC.

1994 UCP becomes one of the first national charities to merge onto the information superhighway by establishing a national World Wide Web presence.

1996 UCP launches a new television event, Star Fest , to replace the UCP telethon. Star Fest features sports celebrities such as Pete Sampras, Monica Seles and Bob Costas, Dan O'Brien, entertainment notables such as Tyra Banks, and hosts Charles Perez, Brian Austin Green, Audrey Landers, Paul Williams and "Downtown" Julie Brown.

2000 UCP launches its website at www.ucp.org .

2002 UCP and TNT present the original film, Door to Door , featuring William H. Macy , who portrays Bill Porter, a salesman with cerebral palsy. UCP ranks 18 th in the Non-Profit Times’ list of Top 100 nonprofit organizations. UCP announces William H. Macy as UCP Celebrity Ambassador.

2004 The Life Without Limits initiative launches in April, and UCP starts a far-reaching dialogue about how people with disabilities can become fully integrated in society and live a life without limits .

2005-2006 UCP affiliates in places like Massachusetts; Texas; and Alberta, Canada begin hosting Rides Without Limits , Walks Without Limits and Laughs Without Limits . Dozens of “Focus Groups in a Box” are sent to organizations across the country, allowing people to envision how life without limits might impact their work.

2006 Emmy-nominated actress Cheryl Hines becomes a member of UCP’s national Board of Trustees. UCP releases its first national, annual analysis of Medicaid: The Case for Inclusion , in March. It ranks all 50 states and the District of Columbia (D.C.) for Medicaid services provided to intellectual and developmental disability populations. UCP works with Members of Congress, staff and other disability coalition members to support passage of the following laws ( ucp.org/public-policy/policy-achievements ):  Tax Relief and Health Care Act  The Lifespan Respite Care Act  Deficit Reduction Act (DRA) of 2005 (P.L. 109-171)  Post Katrina Emergency Management Reform Act, which was included in the Department of Homeland Security Appropriations bill for FY 2007  Combating Autism through Research, Screening, Intervention and Education Act  National Institutes of Health Reform Act

2007 UCP works with Members of Congress, staff and other disability coalition members to support passage of the following laws ( ucp.org/public-policy/policy-achievements ):  The U.S. Troop Readiness, Veterans Care, Katrina Recovery and Iraq Accountability Appropriations Act of 2007 (P.L. 110-28), which included a raise in the minimum wage to

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$7.25 over 2 years. An extension until August 31, 2011 of the Work Opportunity Tax Credit (WOTC) was also included in the law. • Omnibus Appropriations Act of 2008, which included substantial increases for: • Social Security Administration (+$451 million); • HUD's Section 8 Housing Choice Voucher Program (+$500 million); • the IDEA State Grant (+$260 million); • the Vocational Rehabilitation State Grant (+$37 million); and • the Autism Program (+$16 million) • In addition, $2 million was set-aside for a National Clearing House and Technical Assistance Center for the families of children with developmental disabilities.

2008 UCP works with Members of Congress, staff and other disability coalition members to support passage of the following laws ( ucp.org/public-policy/policy-achievements ):  Moratoria on six proposed Medicaid regulations were included in the Supplemental Appropriations Act, 2008 (P.L. 110-252).  The ADA Amendments Act (P.L. 110-325)  The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (contained in the Emergency Economic Stabilization Act of 2008 (P.L. 110-343))  The Prenatally and Postnatally Diagnosed Conditions Awareness Act (P.L. 110-374)  The Higher Education Opportunity Act (P.L. 110-315)  The National Affordable Housing Trust Fund Act, which was included in the Housing and Economic Recovery Act (P.L. 110-289)  The Over-the-Road Bus Transportation Accessibility Act (P.L. 110-291)  The Federal Railroad Safety Improvement Act (P.L. 110-432)  The Genetic Information Non-Discrimination Act (P.L. 110-233)  The SSI Extension for Elderly and Disabled Refugees Act (P.L. 110-328)

2009 UCP launches Ruby’s Bequest , an interactive, future forecasting, role-playing immersive experience that looks to community, instead of government, to find strategies to create the future of caregiving. UCP launches My Child Without Limits (mychildwithoutlimits.org ) in April. UCP works with Members of Congress, staff and other disability coalition members to support passage of the following laws ( ucp.org/public-policy/policy-achievements ):  Coverage of people with disabilities under the Hate Crimes Act  The reauthorization of the State Children's Health Insurance Program (SCHIP)  American Recovery and Reinvestment Act (ARRA):  $87 billion for enhanced federal match for Medicaid  $11.3 billion increase for the Individuals with Disabilities Education Act (IDEA) State Grant  $400 million increase for the IDEA Preschool Program  $500 million increase for the IDEA Part C Early Intervention Program  $540 million increase for the Vocational Rehabilitation State Grant Program  $140 million increase for Independent Living Programs

2010 UCP launches Mission Driven Business , which provides consulting services to affiliates. Utilizing the expertise in the affiliate network, along with UCP staff and volunteer board and committee members, UCP assists affiliates through the Mission Driven Consulting team to help build, revise or expand strategic planning, and provide critical financial analysis. Learn more at ucp.org/affiliates/mission-driven-business . UCP is among a select group of nonprofit organizations invited to the White House in May to discuss ways to address the unique challenges facing military families and build stronger civilian- military community ties, while engaging and highlighting the service and sacrifice.

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UCP and its Capability Scotland affiliate commemorate the 20th anniversary of ADA, and 15th anniversary of the Disability Discrimination Act in the United Kingdom, with an event hosted by the British Ambassador and Lady Sheinwald at the British Embassy Residence in Washington, DC. The evening honors efforts of those who created the landmark laws and continue to work to achieve a life without limits for people with disabilities. This commemoration also marks the formation of ABLE , a group of young professionals committed to supporting UCP. ABLE finds opportunities to increase education and awareness of disability issues. Members support UCP by volunteering at local affiliates and in the community, attending social events and creating fundraising opportunities. UCP and the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) celebrate a new partnership by co-hosting a fall forum , featuring a panel of leading researchers, medical experts, technologists and futurists who explore advances that are changing the ways that people with cerebral palsy and other developmental disabilities live their lives .

2011 UCP distributes the latest video that tells the UCP story: http://bit.ly/VideoPSA . UCP names Actor RJ Mitte , of Emmy-nominated AMC drama "," as Celebrity Ambassador on National Cerebral Palsy Awareness Day in March. UCP debuts its new website . The Case for Inclusion 2011 report finds progress in Medicaid services, but nearly 33,000 Americans with ID/DD still live in 162 large, state-run institutions. UCP transforms its policy effort in April, while continuing to join with many disability organizations on projects, and actively participating as a member of the Consortium for Citizens with Disabilities (CCD). In doing so, UCP maintains its strong presence in federal

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advocacy and expands its grassroots and state-by-state service efforts to its nearly 100 affiliates. UCP unveils a website section, Affiliate Mission Moments , at ucp.org/affiliates/affiliate-mission- moments , featuring incredible affiliate work. UCP joins forces with AAPD in the Campaign to Protect Medicaid , a multi-media effort to raise awareness and call on our nation’s leaders to preserve Medicaid in debt ceiling negotiations, in July. The campaign informs individuals nationwide though media outreach and media coverage; social media updates, and radio advertisements running in Iowa and New Hampshire. In addition, UCP launches a new section of its website –Faces of Medicaid – to keep readers abreast of the latest proposals that might impact the program while sharing real-life stories of everyday Americans showing the value of Medicaid for people with disabilities and their families. UCP produces a video from UCP Celebrity Ambassador & Trustee Cheryl Hines , where she describes what led to her involvement with UCP and encourages others to get involved to further the civil rights movement. Video: http://bit.ly/WhatsImportant2Cheryl . UCP unveils a new International Resources web page , including global UCP affiliates and additional international resources, at ucp.org/resources/international-resources . UCP’s kicks off a year of partnerships and study around ways to promote to increase accessibility in housing for all Americans at its Fall Forum, A Home for All Americans , at the National Association of Home Builders in Washington, DC. UCP moves into a new office: 1825 K Street NW, Suite 600, Washington, DC 20006. UCP unveils its Public Education & Outreach initiative ( www.ucp.org/publiced ), in November.

2012 UCP relaunches Brave Kids , an online resource and community for kids & parents, in April.

UCP’s The Case for Inclusion now offers new online features, reports and data from all previous reports, with a new web module and design at ucp.org/public-policy/the-case-for-inclusion . Users can compare state & national data within and among years ; view state scorecards ; interact with the ranking map; view featured report highlights ; advocate for areas needing improvement in states, and promote achievements; and download all full reports.

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Find the Latest Versions Access the most up to date versions of documents, which are continually updated. • UCP Moments of Pride & Advances : downloadable/printable as part of the UCP Fact Sheet ucp.org/about

• UCP Affiliation Guide : downloadable/printable ucp.org/affiliatepages

Supporting UCP’s Vibrant Network UCP produces this affiliation guide to provide a reference to access multiple opportunities to engage with UCP and the network. We love hearing from you and we hope that you will continue to utilize the resources of the national office. The staff is committed to identifying ways to support the entrepreneurial work done by affiliates as you strive to provide a life without limits for people with disabilities.

Updated: July 13, 2012

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