UCPM faces uncertain future

United Cerebral Palsy of Minnesota (UCPM) will shut down its office in St. Paul by June 30, unless a group of parent volunteers can turn the tide. The board of directors made the difficult decision April 18 to dissolve the organization. The organization may be the latest casualty of a changing financial climate for nonprofit organizations.

UCPM serves people with cerebral palsy, families and caregivers. The Minnesota chapter and about 100 other UCP affiliates throughout the United States provide educational, advocacy and support services. The St. Cloud/Central Minnesota UCP affiliate won’t be affected by this closing.

The pending closure of the Minnesota chapter ends a tradition of service that began in 1953. “It’s absolutely devastating,” said Executive Director Carrie Mastenbrook. She and others involved in the organization are concerned about the families UCPM serves.

One big question is what to do with the Minnesota Assistive Technology Loan Network (MATLN), which UCP has operated since 1998.

The agency historically has served persons with disabilities other than cerebral palsy. Nationally, more than 65% of people served by UCP have disabilities other than cerebral palsy, including Down syndrome, autism, physical disabilities and traumatic brain injury.

UCP began in 1949. The Minnesota chapter incorporated in 1953, electing its first board, program services and medical advisory committees. Robert Hohman was hired as the first executive director. The statewide group changed its name to United Cerebral Palsy of Minnesota, Inc. in 1970.

Hundreds of people served on UCPM’s boards and committees over the years. In 1993, Rob Chalmers became the first person with cerebral palsy to chair the agency’s board of directors.

Affiliates were started in Rochester, Olmstead County and St. Cloud in the early years. Others would later include UCP of the Range, serving Iron Range communities; UCP of the Red River Valley, UCP of Austin and UCP of Southwest Minnesota. UCPM spent much time developing programs with local affiliates and assisting them in fundraising campaigns.

Raising funds has always been part of UCPM’s work. In 1954, UCPM’s first telethon grossed $124,481. Other fundraising included direct mail and door-knocking campaigns, walk-a-thons, dance parties, bike-a-thons, golf tournaments and an event called The World’s Largest Line Dance. In the 1970s “Peanut Butter Sunday” was sponsored by 4-H groups statewide, with sale of jars of peanut butter.

In 1954, UCPM had its first poster child, Karen Boersma. She passed away last month. By the early 1970s UCPM featured individuals in marketing campaigns and dropped the poster child campaign.

UCPM has been involved with many efforts to improve services for Minnesotans with disabilities, including the federal Americans with Disabilities Act I 1990 and numerous state and federal law changes, legal actions and collaborative programs. In the 1950s and 1960s, UCPM members lobbied for programs including the creation of day activity centers, vocational rehabilitation, special education programs and sheltered workshops. The medical committee worked to open clinics and promote more education for doctors, dentists and other medical professionals, to assist patients with cerebral palsy.

Another focus was to improve schooling for children with disabilities. In 1957, UCP Minnesota helped establish special education teacher training programs at the Mankato and Moorhead teachers’ colleges.

UCPM was also involved with groundbreaking research to help Minnesotans with cerebral palsy, starting in 1956. Dr. Helen Wallace, in cooperation with the Minnesota Department of Public Welfare and the University of Minnesota, conducted a survey to determine the number of people with cerebral palsy in Minnesota.

This research and advocacy continued, sometimes with partner organizations. In 1964, UCPM conducted a survey on residential homes for adults with physical disabilities. That same year the agency also worked with the Association for Mentally Retarded to study and call for changes in state institutions.

Yet another research and advocacy effort began in 1968, with Courage Center, when UCPM worked with that agency to call for building facilities and sidewalk cuts that are accessible to people with physical disabilities. State and local elected officials, units of government and businesses were resistant to this change. The advocates persisted and not only were able to ultimately push for law changes mandating accessibility, but also improvements to transportation facilities and other services.

A huge victory was won in 1971 when the federal Developmental Disabilities Act was passed. It covered services for people with developmental disabilities, cerebral palsy, epilepsy and other neurological conditions. It was seen as the beginning of “real change” for people with cerebral palsy and their families.

UCPM has long been involved with the Minnesota Consortium for Citizens with Disabilities (MnCCD), the Minnesota STAR Program, state councils and boards, and programs to provide needed adaptive equipment.

But not all has been work. One fun event in 1962 was the Thanksgiving Hop in Minneapolis, which was the largest dance of its kind in the United States. KDWB Radio was the media partner. Other teenage sock hops were held around the state by local affiliates. These popular events not only were enjoyable, they also raised awareness and support for UCP.

Another fun form of outreach was a Minnesota State Fair booth, which UCPM ran for several years. At the first booth in 1963 the UCP women’s committee ran the booth and sold handmade items created in the UCP of Minneapolis workshop.

Another example was in 1993, when Dynavox Systems and UCP hosted the first Zippity Zoo Day—a day for people who use augmentative communication devices to socialize with each other. That is still recalled as one of the organization’s fun events.

History was compiled from Access Press files and the UCPM website.