National Organizations
The National Advocacy Voice for I/DD Individuals
VOR
VOR: www.vor.net
The Home and School Association of the Southbury Training School (STS) works in partnership with VOR, the national organization that advocates for choice in care and services for all people with intellectual and developmental disabilities (I/DD).
Since 1983, VOR has advocated for the rights of all I/DD individuals and their guardians to choose among a full array of residential options, including facility-based options such as STS.
VOR values residential choice as a legal right, recognizing that true person-centered planning ensures high-quality, cost-effective care.
VOR opposes “deinstitutionalization.” The term refers to the closing of state and/or federally licensed specialized settings, such as STS. Such closures, which are happening throughout the country, are forcing I/DD individuals with severe disabilities into “community-based” settings that are ill-equipped to provide the high level of care and services these individuals require. It has resulted in many deaths and much misery.
The Home and School Association of STS supports VOR’s efforts to ensure high quality care and human rights for all I/DD individuals. We believe the right to quality long-term care for our most vulnerable citizens cannot be ignored, and that STS, with its full spectrum of services, should be made available as a choice, particularly for I/DD individuals on Connecticut’s waiting list who have severe disabilities or who are elderly or aging, and desperately need the high level of care STS provides.
To learn more about VOR and issues affecting the care and rights of I/DD individuals in all states, visit the VOR website (www.vor.net/about-vor).
The Home and School Association of the Southbury Training School (STS) works in partnership with VOR, the national organization that advocates for choice in care and services for all people with intellectual and developmental disabilities (I/DD).
Since 1983, VOR has advocated for the rights of all I/DD individuals and their guardians to choose among a full array of residential options, including facility-based options such as STS.
VOR values residential choice as a legal right, recognizing that true person-centered planning ensures high-quality, cost-effective care.
VOR opposes “deinstitutionalization.” The term refers to the closing of state and/or federally licensed specialized settings, such as STS. Such closures, which are happening throughout the country, are forcing I/DD individuals with severe disabilities into “community-based” settings that are ill-equipped to provide the high level of care and services these individuals require. It has resulted in many deaths and much misery.
The Home and School Association of STS supports VOR’s efforts to ensure high quality care and human rights for all I/DD individuals. We believe the right to quality long-term care for our most vulnerable citizens cannot be ignored, and that STS, with its full spectrum of services, should be made available as a choice, particularly for I/DD individuals on Connecticut’s waiting list who have severe disabilities or who are elderly or aging, and desperately need the high level of care STS provides.
To learn more about VOR and issues affecting the care and rights of I/DD individuals in all states, visit the VOR website (www.vor.net/about-vor).
See “People as Pendulums: Institutions and People with Intellectual and Developmental Disabilities,” an article by Tamie Hopp, former executive director of VOR, published in Non Profit Quarterly on July 16, 2014 about the need for intermediate care facility services (STS is an intermediate care facility) in the care for people with IDD.
A Testimonial for VOR From Jane Anthony
Loving Mother of Jason ~ Longtime VOR Advocate
~ April 27, 2017
Loving Mother of Jason ~ Longtime VOR Advocate
~ April 27, 2017
I would like first to speak to all of the families who still benefit from an Intermediate Care Facility (ICF)/Training Center/Developmental Center, however you should refer to it. By organizing a parents group, you can have a powerful voice in your state legislature. Use it. If you still have an ICF and a strong parents group, reach out to whoever you can – other parents, siblings, friends and supporters – these people are the VOICE of your “child”. Remember also that a larger ICF offers members of your state’s legislature the opportunity to observe the extent of the need – an experience that they cannot have if the many residents are dispersed to a dozen or more locations throughout the community.
If your center closes as did mine, this unified voice becomes splintered and goes away. You will no longer have the clout to make waves in your state legislature as before. Once your loved one is moved into a smaller waiver setting, you become more isolated. It has been my experience that the other families of those in our provider’s care do not have an organized voice, and even my son’s housemate’s families are not active. Only more integrated groups offer a chance to bond with a large number of people who are willing to express themselves and represent the needs of your loved ones and theirs.
My son Jason lived at the North Virginia Training Center for 37 years where he received excellent care from long-time direct care staff, therapists, medical professionals and outside specialists, as well as more than four volunteers per resident. He was an integral part of the community with outings, Special Olympics, and even summer camp. There were always something going on at the Center designed for the residents – wheelchair games, projects, and big formal dances. The Center closed in December of 2015, and we along with all the other families had to choose between a 4 hours drive to a Center that was also threatened with closure or a local waiver home designed around Jason’s needs. We chose the latter. For all Center families, our “children” went their separate ways dispersed into a variety of community settings hence scattering them over a wide geographical area. We lost our tightly knit fellowship of parents that had kept a watchful eye on not only their own child, but those of other families who lived in the same unit.
Unfortunately, those groups in the community that claim to represent families are the very organizations that took away your rights to ICF care. If your center does close, try to keep in touch with the other displaced families. This isn’t easy, but it helps to be aware of how the transition and alternative placements are working out and, if need be, to call upon your legislative allies for assistance. It can also help to hold the state accountable for any unfulfilled promises, unmet needs, abuse, neglect, accidents or deaths resulting from their decision to close the ICF.
And if your ICF does close, that doesn't mean that you don't still have VOR. In fact, VOR becomes even more important to sustaining a meaningful voice for those who are most vulnerable. VOR is the only national voice that represents choice of placement for all. It is so important that we come together, share our experiences, focus our efforts, and combine our individual voices into a national chorus. What is fixed at the national level doesn’t have to be fought over in each and every individual state. If there is ever any hope for families who have lost their ICF to return to ICF care in the future, VOR is that hope. The inherent logic of congregate care with its integrated services and cost efficiencies argues its own case if given a voice. Hope lies in our shared voice through VOR.
That’s why it is so important to come to D.C. each year, to share our experiences, sense our strength, re-energize our hope, and educate and influence our representatives. Through reports from State Coordinators, VOR committee presentations, the VOR board meeting, shared dinners, and organized advocacy on the Hill – we bond, we organize, and we act.
All of this strengthens VOR’s voice, and the combined voice of our loved ones with intellectual and developmental disabilities.
- Jane Anthony
If your center closes as did mine, this unified voice becomes splintered and goes away. You will no longer have the clout to make waves in your state legislature as before. Once your loved one is moved into a smaller waiver setting, you become more isolated. It has been my experience that the other families of those in our provider’s care do not have an organized voice, and even my son’s housemate’s families are not active. Only more integrated groups offer a chance to bond with a large number of people who are willing to express themselves and represent the needs of your loved ones and theirs.
My son Jason lived at the North Virginia Training Center for 37 years where he received excellent care from long-time direct care staff, therapists, medical professionals and outside specialists, as well as more than four volunteers per resident. He was an integral part of the community with outings, Special Olympics, and even summer camp. There were always something going on at the Center designed for the residents – wheelchair games, projects, and big formal dances. The Center closed in December of 2015, and we along with all the other families had to choose between a 4 hours drive to a Center that was also threatened with closure or a local waiver home designed around Jason’s needs. We chose the latter. For all Center families, our “children” went their separate ways dispersed into a variety of community settings hence scattering them over a wide geographical area. We lost our tightly knit fellowship of parents that had kept a watchful eye on not only their own child, but those of other families who lived in the same unit.
Unfortunately, those groups in the community that claim to represent families are the very organizations that took away your rights to ICF care. If your center does close, try to keep in touch with the other displaced families. This isn’t easy, but it helps to be aware of how the transition and alternative placements are working out and, if need be, to call upon your legislative allies for assistance. It can also help to hold the state accountable for any unfulfilled promises, unmet needs, abuse, neglect, accidents or deaths resulting from their decision to close the ICF.
And if your ICF does close, that doesn't mean that you don't still have VOR. In fact, VOR becomes even more important to sustaining a meaningful voice for those who are most vulnerable. VOR is the only national voice that represents choice of placement for all. It is so important that we come together, share our experiences, focus our efforts, and combine our individual voices into a national chorus. What is fixed at the national level doesn’t have to be fought over in each and every individual state. If there is ever any hope for families who have lost their ICF to return to ICF care in the future, VOR is that hope. The inherent logic of congregate care with its integrated services and cost efficiencies argues its own case if given a voice. Hope lies in our shared voice through VOR.
That’s why it is so important to come to D.C. each year, to share our experiences, sense our strength, re-energize our hope, and educate and influence our representatives. Through reports from State Coordinators, VOR committee presentations, the VOR board meeting, shared dinners, and organized advocacy on the Hill – we bond, we organize, and we act.
All of this strengthens VOR’s voice, and the combined voice of our loved ones with intellectual and developmental disabilities.
- Jane Anthony
