The Beginning
The Kansas Association of Centers for Independent Living (KACIL) started as a result of monthly meetings required by the Kansas Rehabilitation Services (KRS). The directors of the Centers for Independent Living (CILs) met on a monthly basis at the direction of the state coordinator for independent living services for KRS. The purpose of those meetings was to impart information to all centers in a more timely fashion, including the formulation of a state plan on Independent Living. Directors active in the National Council on Independent Living (NCIL) would provide updates about national activities. The Kansas Advisory Committee of Employment of the Handicapped (KACEH) staff were also invited to present state and national agendas at these meetings.
There were CILs located in Kansas City, Topeka, Lawrence and Hays at that time. Maggie Shreve was the Director in Kansas City, Mitch Cooper in Topeka, Mona McCoy in Lawrence and Paula McElwee in Hays. These were all federally funded Centers. Funding came from Title VII Part B of the Rehabilitation Act of 1973 as amended. Each Center, in their application would indicate a “service area they would cover. Each CIL had their own service area.
The first item on the Director’s agenda was to promote state funding to increase the number of centers in the state. After a great deal of advocacy at the legislature by advocates and the Kansas Rehabilitation Services, state funding became available for two new CILs.
Independent Connection in Salina was established as the first state funded program in 1983. Gina McDonald was the Director. The Wichita Center, then called Project AID, was established with state funds in July of 1984. Diane Schreyer and Melba Gwaltney were the co directors.
There was some hesitation on the part of the federally funded CILs to accept the newly formed programs. Independent connection was a program of OCCK, Inc. and Project Aid was a program of UCP. Neither had independent governing boards and so the two new Centers had to prove their understanding and follow through on independent living philosophy. Advocacy Efforts As new Centers were added the drive time to the monthly day long meetings increased. The directors would agree on a hotel and drive in the evening prior to the meeting. The Center Directors would meet for dinner and drinks, and share information about programs, services, advocacy efforts and national activities. They also found this to be valuable for peer support. Issues such as board relationships, fiscal management, volunteers, peer support models and staff supervision were discussed. Directors shared successes and failures. Since there was no competition over “service area”, Directors tended to be much more honest about concerns. They also were very happy to share their manuals, and programs.
The Directors decided, in early 1983 to form an association for the purposes of advocating as one voice and to provide technical assistance and peer support to one another. In June of 1985, the group had formed an association. The first Directors of KACIL included Gina McDonald, President, Mona McCoy, Vice President, Maggie Shreve, Secretary, Mitch Cooper, Treasurer, and at large members Alice Purvis, Bill Reyer, Shelia Nelson, Laura Moore, and Bob Mikesic, who took over for Paula McElwee, Melba Gwaltney and Diane Schreyer.
On July 24, 1985, KACIL incorporated as a 50l(c) 3 not for profit organization The members of the board of KACIL at the time of incorporation included the current members and Margaret Bond Wares, Hays.
Once KACIL was organized as a 501(c)3, we developed a mission statement and bylaws and had our first planning meeting. The original mission of KACIL was to "advocate for the independent living needs of disabled citizens of the state of Kansas, and to develop new resources and identity and provide access to existing resources which provide the services needed by disabled Kansans so that they may live independently in the situation and community of their choice.
In 1984, the federal government provided funding to states for Title VII Part A. In order to receive funding, each state was required, in conjunction with consumer groups, to develop a state plan for Independent Living, which would describe how these funds would be used.
KACIL provided input into the first state plan for Independent Living. As its two priorities, KACIL promoted the development and funding for more CILs and a state Personal Care Assistance (PCA) program that was consumer directed. Since the state had final say as to the direction of the State Plan for independent living, they decided to fund the development of three new CILs and for the durable medical equipment (DME) program. The DME program provided funding to individuals who were considered to be “too severe” to be served under the regular VR program for purchase of equipment. Part A funding became available for three new CILs. They were located in Valley Falls, Osage City and Wamego. Alice Purvis was hired as the Director in Valley Falls, Bill Reyer in Osage City and Laura Moore in Wamego.
In 1986, KACIL began its advocacy efforts at a state level by working together with the Kansas Advisory Committee for Employment of the Handicapped (KACEH) to promote legislation for self directed services for individuals who were using personal care attendants under the Title XIX Home and Community Based Services (HCBS) Waiver. This also required a change in the Nurse Practice Act which would allow for non medical attendants to perform health maintenance activities that currently required a registered nurse.
KACIL directors along with KACEH and consumers raised funds to sponsor the first Kansas Disability Caucus in 1988. This brought people with disabilities from all around the state together to develop legislative agendas for local, state and national issues. People with disabilities came together in Salina, Kansas. Nationally known speakers, including Ed Roberts, President of the World Institute on Disability came to speak on issues relevant to disabilities, and for three days people with disabilities attended presentations in the morning and caucus groups in the afternoon. Self Directed Personal Care Assistance services were the overwhelming need described by participants at the first Caucus.
The Disability Caucus grew in reputation and numbers of participants and was held in subsequent years in Wichita and Topeka. Other key issues that KACIL carried to the legislature that came out of these caucuses included the need for affordable, accessible housing and the need for accessible, affordable health care.
In 1989, KACIL and KACEH were successful in advocating for the passage of House Bill 2012, Consumer Directed Option for Personal Assistance under the Home and Community Based Services (HCBS) waiver. That same year KACIL and the Kansas Commission on Disability Concerns (KCDC, formerly KACEH) successfully advocated for legislation which strengthened the Kansas Act Against Discrimination (KAAD). KACIL identified the need for a more permanent presence in Topeka to promote the rights of disabled people.
In December 1990, the Topeka Independent Living Resource Center (TILRC) in essence gave a two year start up grant to KACIL to hire a part time staff person. The Executive Director would work as a consultant to TILRC for 1/3 of the time, as an outside consultant for 1/3 time and as the Director of KACIL for 1/3 time. Gina McDonald was hired as the first Executive Director for KACIL. During that time, funds were raised both for KACIL and CILs such that KACIL dues from the CILs and consultation helped to fund the organization as a free standing operation. TILRC continued to provide support through use of staff, equipment, supplies and resources for three years.
In 1990 KACIL held the Disability Caucus in Wichita. Since there was a gubernatorial election that year, KACIL invited the candidates. A representative from then Governor Mike Hayden's office attended. Candidate Joan Finney attended herself and promised to address disability issues in her administration. In fact she spoke of creating an independent living commission. In November of 1990, Joan Finney was elected as the states first woman Governor. KACIL wasted no time in scheduling an appointment with the new administration. Gina McDonald, Executive Director and President Mike Donnelly met with Mary Holiday, the Governor's Chief of Staff. She agreed to regular meetings to address disability needs. She proposed hiring a "Disability Liaison" to the Governor. Shortly after, Renee Gardner was appointed to the Governor's staff to address disability issues. Ms. Gardner and Ms. Holiday proved to be great advocates for people with disabilities.
In order to increase our effectiveness in Topeka, KACIL worked with other advocacy organizations who would be working on legislation in 1991. KACIL and KCDC jointly developed a “Statement of Solidarity". This statement outlined principles that supported only funding for community based services and encouraged any legislation that would protect the rights of individuals with disabilities. Eventually over twenty organizations and associations signed the statement. The statement was presented to newly elected Governor Joan Finney and to all legislators. KACIL worked closely with the Governor's office, Kansas Association of Rehabilitation Facilities (KARF), Kansas Commission on Disability Concerns (KCDC), Kansas Alliance for the Mentally Ill, the Association of Community Mental Health Centers and the Kansas Commission for the Deaf and Hearing Impaired.
That year, legislation was passed that clarified and improved the rights of people with disabilities under the Kansas Act Against Discrimination. Legislation was approved to incorporate the Americans with Disabilities Act access guidelines into Kansas law. A bill was passed which would allow the KACIL centers to "buy" into the Kansas State employees health care system and Kansas Public Employees Retirement System. The coalition with KACIL in the lead was also successful in accessing state general funding for three additional CILs. With this funding, three new centers began operation in 1993. They were located in Kansas City, Kansas, directed by Tom? Parsons, with Shari Coatney as director and Dodge City, directed by Tim .
In 1991, KACIL collaborated with the Missouri Association of Centers for Independent Living (MACIL) to write a proposal to the National Institute for Disability Rehabilitation and Research (NIDRR) to develop a Disability Business Technical Assistance Center.
We were unsuccessful in receiving the grant, as were most other consumer groups around the country, however in 1992, KACIL received a sub contract grant through the University of Missouri to provide technical assistance for compliance with the Americans with Disabilities Act (ADA) in Kansas. KACIL hired Mary Ellen O'Brien Wright as an assistant to work on that project.
Kansas University worked together with KACIL and other groups promoting the rights of people with disabilities to write a national Technology Assistance Grant and was funded in 1993. KACIL became a subcontractor on that grant and was responsible for the systems change and funding portion of the project. KACIL worked closely with the other three subcontractors, OCCK, Inc., Families Together, Inc., and Cappers. In March of 1994, Michael Oxford was hired to be the KACIL Assistant Director and the Project Director for the Technology Assistance Grant.
1993 saw the Reauthorization of the Rehabilitation Act. The amendments to the act included a big push toward more consumer control in the programs served under the Act. One of the major changes in Title VII was that the statewide advisory committee on independent living was given much more consumer authority. Previously this group only gave recommendations to Kansas Rehabilitation Services (KRS) on the development of the Statewide Plan for Independent Living (SPIL)
Under the amendments of 1993, the Council became the Statewide Independent Living Council (SILC) . Council members are appointed by the Governor. The SILC must be cross disability and should represent the entire state. The SILC is no longer an advisory group, but has equal sign off authority with the commissioner (Director) of KRS. This Council, in conjunction with the KRS Commissioner, developed the SPIL, and determined how all public dollars for independent living would be used. Both the Commissioner and the SILC must agree to the plan before it can be submitted to Washington. Further, the Act stated that the SILC must not be housed in any department of the state government.
KACIL provided training to its members regarding the amendments to the Rehabilitation Act and invited Renee Gardner from the Governor's office to attend. Since she would be responsible for recommending members of the council to the governor, we felt it was imperative to include her. Renee did involve KACIL as well as KRS in the selection of the members of SILC.
By 1994 the SILC had been appointed. KACIL Executive Director, Gina McDonald was elected as the first President. She and Martha Hodgesmith met with Renee and Mary Holiday in early January regarding the SILC. They discussed the issue of where to "house" the SILC. Gina and Martha suggested that it be contained in the Governors office. Mary disagreed in that it would be difficult to keep staff through administration changes. She also pointed out that we may not always have a good relationship with all Governors. We agreed and asked for her suggestions. She said she understood our philosophy to be one of self empowerment and autonomy, so why not form a 501 (c) corporation to house the SILC. With her support and assistance, Kansas was the first state to form a free standing not for Profit Corporation called the Statewide Independent Living Council of Kansas (SILCK).
In 1993, KACIL began in earnest advocating for the closure of institutions for people with mental retardation. Mike Donnelly and Gina McDonald provided testimony and made trips to KNI, Parsons and Winfield. KACIL was the only organization to actively push for the closure of at least one institution.
KACIL worked with KCDC to close workers compensation records to potential employers. Our compromise was to get a paper trail that employers who called the hotline would be tracked. KACIL spent much of its energy on National Health Care and on closure of state institution issues. We successfully worked with Families Together to advocate for state general funds for a statewide Parent Assistance Network.
1994 was the beginning of a push for more consumer control in the options for services under the Mental Retardation / Developmental Disability HCBS waiver. The Developmental Disabilities Reform Act was introduced for the third year. This bill also said that funding should follow the individual out of the institution into the community, and all efforts should be made to ensure that all people were getting services in the most integrated setting.
By 1995, the DD Reform Act was again introduced. The bill that passed allowed individuals with developmental disabilities and their families to determine who provides their services, and funding follows. This bill was very important because it gave consumers with developmental disabilities the right to choose a CIL for services and it gave the CIL the opportunity to be reimbursed for expenses.
In 1996, KACIL and the SILCK advocated for and received funding from the legislature for an additional $ 400,000.00 to fund two additional CILs in Hutchinson and Garden City. By 1997 those Centers were up and running.
In 1995, KACIL began working with the Department on Aging and Department of Social and Rehabilitation Services to look at development of a new waiver for people with physical disabilities. KACIL began advocating for this in 1990, and this year it was taken up by the State. In an unusual and very collaborative effort, the state brought consumers, providers, advocates, SRS and Department On Aging employees together to determine how to best meet the needs of people with physical disabilities. KACIL, KS ADAPT, an advocacy group headed by Mike Oxford, and other groups worked on numerous task forces over the summer to develop what should be included in this new waiver.
By 1996, the waiver was written and approved and now the task of implementation began. The waiver was creative and gave power to the consumer to determine their own needs. The CILs were critical in the implementation. In January of 1997, CILs began assisting consumers on the new HCBS waiver.
Because of the need for networking and the desire to provide information to a wide audience, KACIL established two levels of membership. Individual members are those individuals or agencies that are not Centers for Independent Living, but who have an interest in Independent Living issues. Individuals may not vote at KACIL meetings, but they are welcome to attend and be added to the agenda. CILs belong as full members.
KACIL provides technical assistance and membership support to its members, and works at a state and national level to promote the rights of people with disabilities. As was stated in our original mission, we work to make changes in legislation, regulations, and policies to ensure consumer choice and options and we provide support and information to ensure those choices and options are available.
Written and contributed by Gina McDonald | |