By Dianne Sudbrock
Advocates for Community Choice is a local organization working to establish an “Intentional Community” where people with Developmental/Intellectual Disabilities will live alongside people/families without disabilities who choose to live in the same congregate (gathered together) setting.
In 2014 the Centers for Medicaid Services (CMS) made sweeping changes to the Home and Community Based Waiver requirements, which is a primary funding source for people with developmental disabilities. The requirement emphasized personal choice, access, rights, and self-determination. Unfortunately, CMS set narrow definitions of what constitutes a community setting, resulting in incorrectly categorizing congregate settings as limiting a person’s life experiences, when in fact, they may achieve outcomes that are just the opposite.
The new rulings placed a burden on all congregate settings by establishing a heightened scrutiny process. This meant each setting had to essentially defend itself (through increased effort and documentation) against the presumption that congregate settings were “institutional” in nature and therefore isolated persons with developmental disabilities from the greater community. As a result, many congregate settings have chosen to disperse and transition people into homes that are scattered throughout the general community. That situation essentially took away, or severely limited, the housing options available to individuals who preferred to live in a congregate, supportive setting.
It is the goal of Advocates for Community Choice (ACC) to establish a well thought-out residential development that is fully integrated with the local community, and designed to maximize each person’s full potential. The development, which will be called “Bethel” will have people living together from all walks of life, with all different abilities.
Billie Kramme, president of ACC, said, “We believe that a setting sets the tone for a person’s sense of self-worth and pride. One size does not fit all. For some people, their best setting may be in the larger communities. For others, a neighborhood like Bethel is where they will thrive. People will intentionally choose to live in this setting of all abilities, which then becomes a naturally accepting and supportive neighborhood. Such a setting will encourage and allow personal freedom and choice in a supportive environment while continuing to be involved in the larger community.”
Advocates for Community Choice formed in 2015 as a 501c3 nonprofit organization, after the Emmaus Homes board of directors voted to close its Marthasville Campus. ACC is comprised of community advocates and family members who see the need for congregate settings to continue as a viable option for people with developmental disabilities.
Members of the ACC board of directors are: Billie Kramme, president, R.N. with a life-long focus in the field of developmental disabilities; Celse Berard, vice president, retired President of Riverview Hospital; Jennifer Siervo, secretary, MA in Counseling, has a brother with a developmental disability; Susan Berard, treasurer, retired Director or Clinical Operations of Riverview Hospital; Don Gaertner, retired Director of St. Louis County Library, served on the Emmaus Homes board of directors 12 years; Lynne Unnerstall, parent of a son with a developmental disability, instrumental in starting ACC; Lee Paridy, guardian of a brother with a developmental disability, retired Group Manager-Boeing, volunteer at the Emmaus Homes; Don Smith, parent of a son with a developmental disability, self-employed residential builder, volunteer at Exceptional Equestrians. All these board members are actively moving ACC forward with its mission.
For the past two years, the ACC board has been working to lay the groundwork for creating an intentional community. As part of their efforts, ACC became part of a larger organization, Together for Choice. Through Together for Choice, organizations from across the nation have joined together to tackle legislative issues affecting such communities, meeting with federal and state legislators, informing the public, and working closely with Covington and Burling, a law team out of Washington D.C. that has taken on the advocate’s legislative causes pro bono.
Members of ACC have traveled to Washington, D.C. and to Jefferson City to meet with legislators and government officials to represent the needs of people with developmental disabilities, especially their right to choose where they live and work. Already, it has resulted in legislators contacting the Centers for Medicaid Services, addressing areas of the CMS rulings that have actually infringed on those rights.
ACC is now ready to move forward with building an intentional community in compliance with Federal and State regulations. The first step is to acquire a site (by purchase or donation, or possibly some combination thereof) in a rural setting, preferably in southern Warren County or southwestern St. Charles County. They will need a minimum of 50 acres. The availability of additional acres at some point in the future would be an added perk. If the parcel had an existing home or two, that would certainly help the community get started sooner.
ACC will build accessible homes with a universal design, accessible to virtually everyone, regardless of their level of ability or disability, and will be the property owner/landlord. ACC is not a direct care provider. Residents receiving direct care will continue to receive that care through the agency of their choice. It is expected that multiple agencies will have clients living in the Bethel development.
ACC Board member, Lynne Unnerstall said, “Our vision of an integrated community brings together the best of everything. Those with disabilities who want to live in a safe and rural environment can live side-by-side with those without disabilities. Those with disabilities can live with and belong to a community of peers, as well as those without disabilities, as Bethel will offer homes or villas/apartments to others in the community. All residents will be people who choose to live in the Bethel neighborhood. The neighborhood will allow friendships to develop and flourish, with social activities such as barbeques, baseball games, or getting together to watch a football game or movie.”
Another advocate stated their family member was moved from a congregate setting to a home in a nearby community. “He is doing OK, but does not realize what he has lost. He can no longer walk out his front door and go visit the other residents that he had known for years. He has lost contact with so many of the people he knew – including the care staff, office personnel and maintenance workers, all of whom he counted as friends. My hope and prayer for Bethel is that other people will have the opportunity to experience such a rich and fulfilling lifestyle that he had enjoyed for so many years and that an intentional community can provide.”
Bethel development will also offer the security and stability of a life-long home in a familiar setting. Families and guardians will not have to worry about, “What happens in five years when the lease on the community home where my son/daughter/brother/sister is living expires?”
To help execute and expedite their mission, ACC is looking for people with pertinent professional expertise to align with, such as a real estate developer, an attorney experienced in real estate development, professional engineer, architect, financial director, website management, marketing, etc.
Kramme said, “We currently have over 100 advocates and supporters on our contact list. We welcome parents, guardians, individuals, churches and interested organizations to join with us to make this vision a reality. It is time to move forward. There will be many ways people can get involved—there is much work to do, many tasks relative to achieving our goal.”
Kramme said, “If you would like to learn more about opportunities to serve on our board of directors, or are interested in helping us move this vision forward through financial support, we’d be happy to meet with you in person and discuss those possibilities in more detail.”
For more information visit www.theroadtobethel.com