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  A Gift of Leadership: Max Starkloff and the Formation of NCILBy Charlie Claggett When Max Starkloff went before the U.S. Senate subcommittee on February 24th, 1983, he was not nervous, although the future of everything he had worked for for 13 years was at stake. Disabled since an automobile accident in 1959, Starkloff was testifying before the subcommittee’s hearing on reauthorization of the Vocational Rehabilitation Act. As the founding president of the newly formed National Council of Independent Living Programs (later changed to NCIL), Starkloff represented the first 150 federally funded Independent Living Centers (ILCs) across the country, whose very existence lay in the outcome of this hearing. Had the hearing not gone as expected, the fledgling ILCs would undoubtedly have starved from lack of federal funding. Starkloff’s testimony on that day was a pivotal moment for both the Independent Living Movement and for himself, as it guaranteed the future of the movement and earned him a national reputation as a strong disability rights leader both in Washington, D.C., and among his peers. Starkloff’s story began in a nursing home in 1970. Like another famous rights activist, he had a dream. “One night in the spring of 1970, I fell asleep feeling there had to be a better way to live,” he said. “About 2 a.m., I awakened with an idea of a group of disabled persons living together, sharing expenses and running some sort of business to support us. The idea began to grow and develop into a concept of a totally integrated living situation with disabled and non-disabled persons living and working together. The morning came and the idea still excited me. I told my family and some friends about it, and they thought the idea was sound enough to approach some people in the real estate and rehabilitation fields. I contacted friends in both fields and discussed the idea with them. They also felt it was feasible but warned me of the complexities of such a project. It was my only way out, and I also felt if it could help me, it could also help others.” Max decided to name his idea Para-Quad for paraplegic-quadriplegic. (The hyphen was later removed, making the name Paraquad.) At the suggestion of a mutual friend, a successful young architect named Laurent Torno visited Starkloff at the nursing home, to discuss the latter’s idea. “The concept of a building that would facilitate independent living interested me,” Torno recalled. “But what really interested me was Max. He had an extraordinary outlook on life.” Laurent made countless 80-mile round trips to the nursing home to continue his initial discussions and later devoted thousands of professional hours to Paraquad without ever charging Max a cent. “I judge people a lot by their faces,” Torno said. “Their faces radiate what’s inside, and Max’s face radiated. And … there was not one ounce of self-pity. This is the hand he was dealt, so he’s gonna play it. And he’s gonna use absolutely everything he’s got to play that hand. It’s very easy not to realize how disabled he really is because his whole personality just completely overcomes this extremely high level of disability. Then you start spending time with Max and you quickly realize there aren’t a lot of people like that in the world.” Like many others, Torno had discovered Max’s gift, a unique personal quality that garnered likeability and respect: a quality that would enable Starkloff to win friends and influence people throughout his career. By late 1974, Max’s Paraquad project was gaining ground with potential donors, business people and community and civic leaders. It had also caught the attention of a new physical therapist at the nursing home, 26-year-old Colleen Kelly. A former beauty contestant with a heart-winning smile, eyes that sparkle, and enough energy to light up a small city, Colleen had arrived at her first professional job at the nursing home with a degree in physical therapy from St. Louis University Medical School and with new ideas. “Up until I got there, physical therapy was just a way to occupy people’s time until they died,” she recalled. “I wanted to start a true rehabilitation program. I wanted those people to go home.” Needless to say, she and Starkloff had a lot to talk about. “I had dated a lot of young men,” she recalled, “but none of them had a sense of purpose. Max did. He talked with such passion about his ideas.” Starkloff was not a patient of Kelly’s, so it was not considered improper for the two to spend time together when she was off-duty. It was the beginning of Kelly’s awareness of what it was like for people with disabilities to live in the community. “A real awakening,” she said. Abandoning the “medical model,” they began matching people with similar spinal-cord injuries for the purpose of mutual support and instruction. Kelly found herself feeling less drawn to physical therapy, and more drawn to Paraquad … and Starkloff. Kelly began working with Starkloff from his nursing home room/office to make Paraquad a reality. They were also falling in love. By mid-1975, Starkloff received his first major donation for Paraquad. It was enough to convince him that he could support himself and a family. “As soon as he saw that check, he proposed!” recalled Colleen with a smile. “And, of course, I said yes right away.” On October 3rd, 1975, after 11 years in the nursing home, 38-year-old Starkloff left St. Joseph’s. The next day he and Colleen were married. It was the beginning of a loving family and a history-making disability rights partnership. But raising money continued to be a challenge. “The first few years were difficult,” Starkloff recalled. “The philosophy behind Paraquad was, to say the least, revolutionary. Possible contributors liked the concept but weren’t sure that it would be practical enough to warrant the financial risks.” Max and Colleen established the first Paraquad office in Torno’s office building and continued to learn from fellow disability rights activists. “While developing the apartment complex, we were being exposed to much greater possibilities,” recalled Colleen, “by people like Ed Roberts, Gini Laurie, Lex Frieden and Judy Heumann.” 
“No one environmental need is more important than another,” Starkloff said in 1976. “Housing, transportation, employment, architectural accessibility and attitudes must be tackled simultaneously. The Paraquad idea that began in desperation is now a concept for normal integrated living by the physically disabled, with able-bodied society, in a totally accessible environment.” The Starkloffs had begun to see that their job was much bigger than one unique apartment building. By 1979 they had received a $2.5 million loan from the Department of Housing and Urban Development to build the apartment complex. HUD’s 202 program, however, awarded grants for segregated housing only. “There was no federal money for integrated housing at the time,” recalled Colleen, “so we had to change it to segregated.” Nevertheless in just nine years, Starkloff — with no prior experience in financing or building a large apartment complex — had succeeded. He had financed, purchased, renovated and opened an 83-unit apartment complex and named it The Boulevard Apartments. The first truly barrier-free apartment complex in the St. Louis area opened on September 15th, 1979. Soon after, Starkloff announced that Paraquad’s next step would be the establishment of an ILC. “The idea behind the center,” Starkloff said, “is to provide courses for the disabled (that) include job evaluation, legal rights and related subjects that will improve the opportunities for the disabled to get a job and to live independently.” At this time, Paraquad had received a three-year grant for $200,000 per year from the federal government, courtesy of Title VII, the Rehabilitation Act Amendments of 1978, which for the first time, authorized federal funding of ILCs. Although the original amendment sought $80 million, only $2 million was granted to test the program, the money to be divided evenly among 10 ILCs. In June 1980, the Rehabilitation Services Administration (RSA) called ”Starkloff and the directors of the other nine ILCs to Washington, D.C., to find out just what the government had been funding. “Our basic philosophic guiding principal was always consumer direction and consumer control,” Colleen said. RSA, however, did not believe that disabled people were organized enough and could run their own programs and argued that the ILCs should be controlled by “traditional service agencies,” which were run by people without disabilities. “We decided that if we didn’t set our own policy that the RSA would do it for us,” Starkloff recalled. “We had an opportunity here to determine our own future.” Starkloff and his directors decided they needed to quickly form an organization with national influence that would represent all the ILCs around the country. One month later, ILC directors from Chicago, Boston, Denver, New York City, South Carolina, North Carolina, Maine, Kansas and Rhode Island met at the small Paraquad office in St. Louis. All were disabled, strong, determined people, some of whom, like Starkloff, had spent time in institutions. They decided to form a not-for-profit organization headquartered in Washington, D.C., and asked Starkloff to be the chairman of a planning committee. The directors decided on three goals: 1) To set standards for how ILCs should operate, 2) To break away from the medical services model – to be consumer-directed and consumer-controlled, and 3) To emphasize advocacy and the right of people with disabilities to live independently in the community. Many subsequent meetings were held around the country, and a number of planning committee members visited the birthplace of the Independent Living Movement, the Center for Independent Living in Berkeley, Calif., to study their model for ILCs. In addition, all 10 members of the planning committee were also on the advisory committee of the Independent Living Research Utilization Project (ILRU), a national organization founded in Houston, Texas, in 1975 by Lex Frieden for the initial purpose of studying and defining ILCs and determining what kind of services they would offer. Since 1977, the ILRU had been working to develop a comprehensive set of definitions and a method for categorizing models of programs providing independent living services. The inauguration of President Ronald Reagan on January 20th, 1981, brought about an intense effort to reduce the federal budget. Reagan thought disability programs should be funded by corporate and private sources, rather than the government, and didn’t like funding advocacy groups. RSA, with its large vocational rehab budget, plus other programs for elderly and disabled people, was hit hard. RSA Commissioner George Conn assumed that people with disabilities would be the “weakest link” and focused his budget-cutting efforts on Title VII funding of ILCs. RSA notified Paraquad and three other ILCs in 1982 that their funding would cease, effective immediately. The centers were forced to lay off staff and reduce programs, which meant that about 150 ILCs around the country could not count on receiving federal money in order to establish themselves and determine their futures. Disability rights advocates all over the country responded with aggressive lobbying efforts and grass-roots campaigns. Starkloff paid a visit to an old friend, U.S. Senator Tom Eagleton, who agreed to draft an amendment guaranteeing ongoing funding for Paraquad and the other three ILCs, including retroactive funding. (It was passed on December 21st, 1982.) On November 8th, 1982, still under intense pressure to have a plan for continued funding of all the ILCs, the planning committee, now calling its organization the National Council on Independent Living, issued its final draft of the bylaws. The bylaws articulated the purpose of NCIL, listed 11 objectives and defined the criteria for membership. By February 1983, Paraquad and the other ILCs had still not received the funding that Senator Eagleton’s amendment had guaranteed. One week before the Senate subcommittee hearing, Starkloff sent Senator Weicker stories and statistics illustrating the cost effectiveness of the independent living programs and asked that copies be distributed to all subcommittee members. 
On the day of the hearing, Starkloff was prepared. Having participated in and led hundreds of meetings discussing ILCs, he was one of the nation’s foremost experts on all aspects of independent living. He had also established a reputation within Washington, D.C., as a “sensible planner.” From doing years of advocacy work, he had come to know many of the senators and Congressmen, and they had come to know and respect him. As members of the subcommittee strolled in and took their seats, many of them recognized the Starkloffs and went over to say hello, including Senator Ted Kennedy, a longtime supporter of independent living. Last to arrive was Senator Weicker. As he entered, everyone quieted. An imposing man standing 6’7” and weighing 280 pounds, the senator was well-respected among his peers and considered “the Lord Protector of ILCs.” Max’s friend, Senator Tom Eagleton, sat beside him. Starkloff’s testimony lasted approximately three and a half minutes, after which he answered a few questions. Although it would be weeks before the final Senate vote, one immediate victory for Starkloff came from Weicker, whose closing comment instructed the RSA commissioner to release the funds for the four ILCs that he’d withheld: “Staff will prepare this afternoon, and my signature will be on it this evening, a letter to Mr. Conn to see if we can get those funds released right away.” On May 18th, 1983, the Senate Labor and Human Resources Committee, by a unanimous vote of 18-0, approved reauthorization of the Vocational Rehabilitation Act of 1978, guaranteeing funding of all qualifying ILCs at $200,000 each per year. They continue to fund ILCs today. ******************************* Click here for more on Max Starkloff Postscript: The NCIL bylaws, which the Starkloffs both supported, stipulated that any ILC that owned housing could not qualify for membership in NCIL. After passing the bylaws, they returned to St. Louis not knowing what to do about The Boulevard Apartments. They spoke with real estate and legal experts and decided to retain and manage The Boulevard under a separate company, later selling it in order to pay off their HUD loan. “We never made any money off The Boulevard Apartments, but it got Max out of the nursing home and was a huge learning experience,” Colleen said. ******************************* Charlie Claggett is a writer and marketing communications consultant who lives in St. Louis with his wife, Katie, and dog, Judy VonWeisenschlasen. ******************************* Special Thanks to Colleen Starkloff and other members of the family. |
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