The Power of Parents

The Arc has a rich history spanning 60 years and marked by accomplishment. We continue to carry out the mission and vision of people with intellectual and developmental disabilities, as well as their parents and siblings.

In 1953, a small group of parents and other concerned individuals came together to act as voices for change. At the time, little was known about the condition of intellectual disabilities (at the time referred to as ‘mental retardation’) or its causes.  There were virtually no programs and activities in communities to assist in the development and care of children and adults with intellectual disabilities or to support families.

It was common at that time for doctors to tell parents that the best place for their child was in an institution. Emboldened by their collective desire to raise their children in the home and their stubborn refusal to accept that institutionalization was the only option, The Arc’s founders fought even harder.

Like every parent of any child, they wanted more for their children.  They wanted their children to lead fulfilling lives out in the community and not shuttered away in dark institutions. It was in that spirit that The Arc was born.

The Early Days in Story County

(As written in “History of The Arc of Story County”)
In the early fifties, Dorothy Mather and Nina Pritchard looked ahead a few years to the time when their sons would be out of Ruth Willson School in Ames.  What was there for them to do?  Dr. J. S. Evans, professor of psychology at Iowa State University, encouraged them to talk with Erma Bunge of Cedar Rapids, who had been active in organizing the Iowa Association for Retarded Children, and with members of the Polk County Association for Retarded Children who had organized to seek answers to the same question for their children.

Dorothy and Nina wrote letters asking interested persons to meet with them at the Ames Public Library. Carroll and Edith Jacobson, Roland, were among those who responded. Carroll was involved in parent activities at Woodward and became the spokesman for the group. Also interested were Irene and Ray McBurney, Ames. Mrs. McBurney was an elementary teacher who had a concern for the pupils who could not keep up with regular class work, as well as for those who could not meet the educational requirements for entering school.

As a group, they decided to meet in parks and later in their homes for a social experience for their children and a discussion time for adults.  By 1953, they decided to take the necessary steps for becoming a local unit of the Iowa Association for Retarded Children.  Dayton Countryman, Nevada attorney, offered his legal services for that purpose. On a hot July day they met on the Jacobson lawn to adopt articles and by-laws incorporating them as the Story County Association for Retarded Children. They then commemorated the occasion with homemade ice cream.

After continued meeting for a period of time, the group felt the need of a project that would be of direct benefit to the children. Mrs. McBurney offered to organize a private class to be held for six weeks at North Grant school east of Ames during the summer of 1955. She obtained clearance from the State Department of Public Instruction for the project, and signed releases from the parents to absolve her of liability for accidents. Together she and Dr. Evans gave the children the proper psychological testing and her volunteer experiment in education was underway. Through this experience she was able to demonstrate the potential for this type of educational program.

At the end of the summer, Mrs. McBurney offered this project as one for which the Association might assume responsibility. They accepted her offer and began the search for a teacher and a permanent home. An offer came from the Nevada Township School Board to use their vacant country school house for a training center. It was centrally located in the county two miles east and two miles south of Nevada on an acre of ground. Donna Ose, Collins, an experienced teacher whose sister would be accompanying her to the class, was employed to teach the beginning group of five.

The class started their training in September of the same year, meeting twice each week in a building that had stood vacant long enough to be in need of extensive repair.  Enough work had been done to get the class going, and Verle and Erma Williams, who lived near by and whose son was in the class, assumed many of the first responsibilities for renovating the building.

With many hours of donated labor from parents and friends who were carpenters, plasterers, painters, and electricians, as well as with help from students at Iowa State, the building gradually took on a new look. Renovation included re-shingling half the roof, replacing a door and broken windows, re-plastering and painting the interior, laying linoleum and installing additional wiring.  Also, a new fence was built along two sides of the school yard which adjoined the road. Lack of water was a problem, and a group of service organizations combined to raise money for drilling a well.

At the beginning, lunches were prepared in the hallway by mothers of the children in the class. As a special treat, when one of the classes had a birthday, Jean Henderson, whose daughter attended the Center, made a birthday cake. Later, a new kitchen with eating space and donated equipment gave the pupils an opportunity to share a hot lunch, an important part of their social training. Lucille Weuve, Nevada, was employed to prepare the hot lunches and to assist Mrs. Ose as needed.  The problem of being cold in the winter was alleviated with the installation of a donated furnace. The children were transported from their homes throughout the county by their parents.

The Center operated on a shoestring, so to speak.  Bake sales were held to raise money. Lunches were served at auction sales. Memorials, as well as donations from organizations and individuals all helped to pay the bills.

…and so The Arc of Story County began

A History of Name Changes

  • 1953 – 1973: National Association for Retarded Children (NARC)
  • 1973 – 1981: National Association for Retarded Citizens (NARC)
  • 1981 – 1992: Association for Retarded Citizens of the United States (ARC)
  • 1992 – Present: The Arc of the United States (The Arc)

Changing with the times

We, as an organization have been sensitive to the impact of terminology on our constituency and have adapted accordingly. As the words ‘retardation’ and ‘retarded’ became pejorative, derogatory and demeaning in usage, the organization changed its name to ‘The Arc.’

Today, the term ‘mental retardation’ remains the terminology used in the medical field and referenced in many state and federal laws.  However, ‘intellectual disability’ and ‘developmental disability’ are making their presence known, and we are doing everything in our power to make sure they’re adopted more broadly.

We strongly believe the only ‘r-word’ that should be used when referring to people with intellectual and developmental disabilities is “Respect.”


–  Parent groups throughout the country meet in Minneapolis, MN in 1950 to organize The Arc. – 1953 The Arc of Story County is incorporated –  The Arc becomes the first organization to put money into research on intellectual and developmental disabilities. –  The Arc helps expose the link between lead poisoning and brain damage in infants and children. –  The Arc opens a Governmental Affairs Office in Washington, D.C. –  The Arc’s memberships are key players in the enactment of Public Law 94-142, the Education for All Handicapped Children Act which guarantees a free appropriate public education for all children with disabilities. –  The Arc advocates for the creation of the Supplemental Security Income program to provide income for persons with severe disabilities who have little or no income. –  The Arc helps pass a national housing law that established the Section 8 Assisted Housing program to meet the housing needs of low income families and individuals with disabilities. –  The Arc funded Dr. Robert Guthrie who found a treatment for phenylketonuria (PKU). –  Large numbers of people began to leave institutions as services for people with disabilities emerge within communities. –  The Arc works with other organizations to push for the establishment of the Medicare and Medicaid programs and passage of the Developmental Disabilities Act. –  The Arc publishes a groundbreaking study about infant under-nutrition as a cause of developmental disabilities and holds a major conference on the links between poverty and developmental disabilities. –  The Arc launches a national campaign to support research in the area of prevention and detection of preventable causes of Down syndrome. –  With research funding from The Arc, Kenneth Jones, M.D., defines the disorder Fetal Alcohol Syndrome. –  The Arc helps create the Civil Rights for Institutionalized Persons Act which gives the U.S. Justice Department statutory authority to protect the rights of institutionalized individuals. –  The Arc helps create the Supported Employment program within the Rehabilitation Act. –  The Arc champions the “Baby Doe” Amendment to protect newborns with disabilities from being denied life saving medical treatment. –  The Arc presses Congress to allow home and community-based waiver options under Medicaid. –  The Arc helps negotiate a deal with school authorities to amend the Education of the Handicapped Act to provide services to infants, toddlers, and preschoolers with disabilities. –  The Arc works to pass legislation to authorize courts to award reasonable attorney fees to parents who prevail in special education due process. –  The Arc is involved in creating several work incentives in the Social Security Act to allow more individuals with disabilities to work. –  The Arc advocates for the passage of the Technology-Related Assistance Act to develop state wide assistive technology programs to serve individuals with disabilities. –  The Arc successfully pushed Congress to add disability as a protected class under the Fair Housing Act. –  The Arc plays an instrumental role in the creation of Medicaid’s Early and Periodic Screening, Diagnosis and Treatment program. –  The Arc sponsors a national prevention campaign and convenes a national conference on prevention of intellectual and developmental disabilities. –  Advocacy by The Arc’s Government Affairs Office results in the establishment of the Disabilities Prevention Program at the Centers for Disease Control. –  The Arc is a leader among national disability groups to advocate for the landmark Americans with Disabilities Act. –  The Arc helped create a Medicaid buy-in option for families whose income is somewhat higher than the basic eligibility ceiling. –  The Arc hosts a Summit on Fetal Alcohol Syndrome in Baltimore with support received by The Arc of Maryland from the U.S. Department of Health and Human Services. –  The Arc launches a national media and advertising campaign to raise awareness about the dangers of alcohol consumption during pregnancy.  As a result of these efforts, the Fetal Alcohol Syndrome Prevention and Education Act is passed by Congress. –  A new publication, Genetic Issues in Developmental Disabilities, is initiated as part of The Arc’s Human Genome Project. –  The Arc was involved in drafting the first national family support legislation in 1994 –  The Arc worked to assure that students with disabilities were covered within the educational accountability system under the No Child Left Behind Act. –  The Arc supported the passage of the American with Disabilities Act Amendments which restore lost protections stemming from recent Supreme and lower court decisions. –  The Arc participated at key points in the drafting of the United Nations Convention on the Rights of Persons with Disabilities. –  The Arc and ArcLink launch the National FindFamily Registry, an online database that will help families reconnect with formerly institutionalized family members who they lost touch with long ago. –  The Arc played a key role in stopping huge Medicaid cuts and worked to expand Medicaid supports for low and middle-income families. –  The Arc won expanded provisions in the individuals with Disabilities Education Act and the Higher Education Act that will help students move from public schooling to higher education, employment and adult life. –  The Arc established the National Housing Trust Fund to provide over 50,000 new public housing vouchers for people with disabilities. –  The Arc, in collaboration with the American Association on Intellectual and Developmental Disabilities, published National Goals and Research for People with Intellectual and Developmental Disabilities, a book highlighting challenges to achieving government’s promise to people with disabilities. –  The Arc leads a national effort denouncing the negative portrayal of people with intellectual and developmental disabilities in the feature film, “Tropic Thunder.”  Thousands of self-advocates, disability rights activists and families joined The Arc’s Rally for Respect campaign in demonstration across the country to fight hate speech.
1953 Incorporation of Story County Association for Retarded Children by Dorothy Mather, Nina Pritchard, Irene and Ray McBurney, Carroll and Edith Jacobson, Betty Scheuermann.  Carroll Jacobson is elected first president.  Governing board includes president, vice-president, secretary, treasurer, chaplain, past president and five additional directors.  Dues are $2.00.
1955 Irene McBurney conducts Special Education Demonstration Project at North Grant School.
1955 ARC starts and finances the Story County Training Center located in a country school house south of Nevada.  Five “trainable” students are taught by Donna Ose twice each week.
1959 County assumes partial financial responsibility for the Training Center. The class is relocated in a Nevada home adjacent to central school.
1961 ARC begins participation in Coffee Day fund raising activities with Iowa Restaurant Association. By now the Training Center has nine children enrolled and is called the Story County Retarded Children’s School. ARC membership dues are $3.00 per couple or $2.50 for single membership.
1962 ARC publishes first newsletter.
1967 ARC starts and finances Hope Pre-School located in Collegiate Presbyterian Church. Five physically and mentally disabled children are taught two hours daily by Jan Stromen and volunteers.
1968 ARC finances start up of craft classes.  Classes are located in the Octagon Building and organized by Jan Rhinehart.
1969 ARC members, Paul and Ann Bellinghausen organize Bowling Program.  Irene McBurney chairs Scholarship and Career Day Committee to promote student interest in professions related to mental retardation.
1970 ARC cooperates with Extension Services to start up a summer camp program held at 4-H Camp Center for retarded citizens of Story, Boone and Dallas Counties.
1970 Harlan Elementary School in Ames begins offering a class for “young trainables,” graduates of Hope Pre-School for Handicapped Children. Membership meeting now held every other month rather than monthly.
1971 ARC starts and finances an Activity Center located in Collegiate Presbyterian Church.  Planning committee comprised of Bob Samuelson, Wayner Rhinehart, and Eleanor Elbert. Jennifer Pagoulates is hired as director. Center relocated to 202 ½ Main Street.
1972 ARC members incorporate a new agency, the Association for the Development of Physically and Mentally Handicapped Children and Adults to operate the Activity Center. Later to become Story County Developmental Center (SCDC).
1975 ARC member, Ellen Hadwiger, conducts a survey of housing needs.ARC members incorporate a new agency, Mainstream Living to develop a group home for children. Paulette Simons is hired as first director. ARC changes name to the Story County Association for Retarded Citizens. Budget allows $450 for state and national conventions.
1975 Ames School District assumes responsibility for Hope Pre-School. Program remains at Collegiate Presbyterian Church. ARC makes final contribution of $1000 to the Pre-School Program.
1976 Mainstream Living opens second home for teenagers with ARC support.
1976 Formation of joint board for Mainstream Living and Story County Developmental Center. Reno Berg is hired as director of both agencies.
1977 Mainstream Living opens third home for young adults with ARC support of start-up costs. Dr. Marvin Julius is named “County Advocate” for persons with mental retardation.
1978 ARC (Beth Cheville) purchases books and pamphlets costing $169.18.Materials will be donated to libraries in Ames, Huxley, and Nevada and will be listed in the ARC newsletter. Ames-Gilbert United Way allocation for 1978-79 is $12,000. ARC memberships are $10.
1979 First Advocacy Committee is formed, Marvin Julius, chairman; Ellen Hadwiger and Arlo Ledet members.
1980 ARC helps start up of Pilot Parents in Ames.
1981 ARC assists with NORMALCY, a new organization recognizing Mainstream action linkages for county youth. NORMALCY committee report projects Story County needs for 1982-87.
1983 ARC name is changed to Association for Retarded Citizens/Story County. United Way allocation to ARC is $14,000.
1987 Story County Board of Supervisors appoints the Community Life Program Committee to develop plans for relocating County Care Facility residents in the Ames community. Arlo Ledet, ARC board director is selected to chair committee. ARC members also participate on the Task Force for Integration.
1990 Marilyn Johnson becomes part time consulting Director.
1991 Association for Retarded Citizens / Story County receives a three year Federal grant for respite care.  Emmaly Burklund, owner and Director of Hilltop Daycare coordinated the project.  ARC members who are parents of young children with mental retardation and require special health care form a committee called Community Options.
1993 Organization name changed again to The Arc of Story County to reflect the “people first” philosophy of our organization and draw in alignment with the national level which is now known as “The Arc:  A National Organization on Mental Retardation”.
1994 “Handed over our housing fund of $50,000 to North Central Human Services to prepare for the opening of the ICF-MR homes in Nevada.”
1995 New Executive Director hired, Laurie Ertz.  Part time at 10 hours per week to coordinate respite program funded by Story County after the Federal Grant was complete.
1996 Active Lifestyles program is added and The Arc begins coordinating the local Special Olympics program.  Teen Respite Retreats are also added as a program offering.
1997 The Arc receives a grant to pilot a program for families called Children At Home.
1998 Members of The Arc led by Rev. Tom Prochnow begin Faith Fellowship, a faith sharing opportunity for adults with disabilities.
1999 Long time members of The Arc, Joe and Lois Johanns embark on a journey to start a new Christian living community for persons with autism and behavioral challenges – Friendship Ark homes.
2000 The Knights of Columbus sponsor our first Viva la Arc! Casino Night.
2001 The Arc moves to 430 Fifth St. in Ames to open its first office.
2003 People First and Best Buddies are two new programs added for self advocates -adults with intellectual disabilities.
2005 The Arc expands the Executive Director position to full time.  Members and staff of The Arc of Story County continue to work towards enriching the lives of persons with intellectual and developmental disabilities.
2006 In addition to communities throughout Story County, Ames, hosted the Special Olympics U.S. National games. The Arc board members were involved in a variety of activities related to the games
 2006 October 2006: Laurie Ertz, Executive Director of The Arc of Story County submitted her resignation effective December 1st.
 2006 The six-year-old “Viva ‘la Arc” annual fundraising event, sponsored by the Knights of Columbus, raised $4,000
 2007 Jay Lettow is named Executive Director of The Arc of Story County
 2007 The Arc became a member of the Ames Chamber of Commerce.
 2008 The first “train the trainer” session for the newly formed Transportation Training Program was provided to teach people with disabilities how to safely and confidently use CyRide public transportation.
 2008 The Arc of Iowa’s State Convention was held in Ames and hosted by The Arc of Story County. Nationally known disability advocate presented the program and Iowa Governor Chet Culver attended as the lunch speaker.
 2009 The Arc of Story County moved its offices to 130 South Sheldon Avenue, Suite 302 in Ames. Several human services agencies are housed in the building owned by Collegiate United Methodist Church. Some construction was done to adapt the office space to The Arc’s needs and a ribbon-cutting ceremony was well attended.
 2010 Flooding in Ames caused the closing of 20th Century Bowling where The Arc recently celebrated the 40 year anniversary of the bowling program (1959-2009) The bowling program continued with a new relationship and tradition with Perfect Games also in Ames
 2010 The Arc recognizes the volunteer relationship and financial contributions from Iowa State University student fraternity Pi Kappa Phi with a special bowling event.
 2010 The Arc developed a volunteer relationship with the Iowa State University Student Athlete Advisory Council to assist with special events and the Active LifeStyles program.
 2010 Executive Director, Jay Lettow was selected to attend national “Getting Real” conference hosted by FEMA, to bring together emergency management officials, disability advocates, in order to plan for the entire community. The Arc then helped facilitate local conversations and the development of the Story County Accessible and Functional Needs Shelter Task Force.
 2011 The Arc sponsored co-statewide “Enable Us – Iowa Partners in Preparedness Conference” to discuss the latest issues in preparing and responding to disability communities during emergencies and disasters.
2011 Tricia Crain was named the Executive Director of The Arc of Story County.
2012 Executive Director, Tricia Crain and Board of Director member and Self-Advocate, Koki Nakagawa attended the Self-Advocacy Summit in Chicago, Illinois.
2013 The Arc of Story County had a record number of athletes register for the Active LifeStyle programs.  Bicycling was added to the list of Special Olympics events.
2013 The Arc of Story County had athletes participate at the Big 12 Gymnastics Championship and the Big 12 State Indoor Track Meet.