Assemblyman proposes closing five institutions for developmental disabled
by Susan K. Livio/The Star-Ledger
Thursday January 08, 2009, 6:00 AM
Five of the seven state institutions for people with developmental disabilities would close within five years and the money now spent on them would be used for community housing under a bill a prominent lawmaker is expected to announce today.
Assembly Budget Chairman Louis Greenwald (D-Camden) expects a fight from state labor leaders, which represent nearly 8,000 workers, and families who prefer the around-the clock care provided by the developmental centers.
Mitsu Yasukawa/The Star-LedgerAssemblyman Louis Greenwald (D-Camden), chairman of the Assembly Budget Committee, speaks in June 2008.
But he says there are compelling moral and economic reasons to "radically restructure" the way the state spends money on people with developmental disabilities.
"We are warehousing human life," Greenwald said Wednesday. "We pride ourselves on being a progressive state in health care and science, but New Jersey is so far behind other states in this area. Every other state has closed 140 institutions, and New Jersey has not closed one in 10 years."
Greenwald said the state can no longer afford to support seven institutions, where it costs about $227,000 to house each of their 2,900 residents. He estimated community care would cost less than half of that amount.
"In the economic crisis, we face an opportunity to change failed public policy," Greenwald said.
The facilities, funded by the state and federal governments, cost $384 million in a year to operate, according to the state Department of Human Services.
Under Greenwald's bill, two centers -- one in north Jersey, the other in south Jersey -- would remain open to accommodate the people who want to stay.
The state Division of Developmental Disabilities has moved 176 developmental center residents to community homes over the past two years, division spokeswoman Pam Ronan said. State officials support the bill's concept, "but we are currently reviewing each provision."
State Human Services officials say there are roughly 2,400 people living at institutions who are willing and able to move to community housing.
Reaction to the bill was mixed. Families, advocacy groups and labor leaders said they were stunned by its ambitious scope.
Robin Sims, whose 25-year-old daughter with autism is living happily at Hunterdon Developmental Center, said the bill "shows no respect" to families like hers.
"Why don't they ever talk to the people it affects?" Sims said. She said she has seen some people leave Hunterdon, only to have their medical and psychological conditions regress because community-based care is lacking.
Joseph Young, executive director for Disability Rights New Jersey, which sued the state on behalf of people who want to leave institutions and 8,000 others living with families who are on a waiting list for state-funded housing, called the bill "an incredibly ambitious program.
"Whether they can logistically do it I have no idea, but clearly they are headed in the right direction," Young said.
Don Klein, executive vice president for Local 1040 Communications Workers of America, said the bill appears to be a stunt to save money at the expense of fragile disabled people.
"In our facilities, the residents get occupational therapy, physicians, dentists -- the whole array." The bill is "an assault on these folks," he added.
Norman Reim, spokesperson for the state Council on Developmental Disabilities, praised Greenwald "for taking this on and looking for a long-term strategy."
Reim, however, said the savings may not come right away, noting that when the state closed the North Princeton Developmental Center in Montgomery 11 years ago, a lot of the money was plowed back into creating community services. "You won't reap the savings until a centers is closed, until the last person leaves," he said.
The bill would create a 17-member Community Services Planning Council for Persons with Disabilities responsible for drafting the plan within six months to phase out the five centers and move willing and able people into community housing. The council would be comprised of state officials, advocacy group members, housing provider agencies, families, union leaders and professional experts.
Within five years of the law's enactment, 80 percent of the developmental center population would be placed in the community.
--
Ari Ne'eman
President
The Autistic Self Advocacy Network
Thursday, January 8, 2009
Summary of NJ De-institutionalization Bill A3625
This bill changes the way in which the Division of Developmental Disabilities (DDD) in the Department of Human Services (DHS) will use resources to provide services to persons with developmental disabilities by reducing the division's reliance on developmental centers and strengthening and expanding community based services and supports. Instead of investing a disproportionate share of the division's budget to support an inappropriate level of care through the State's seven developmental centers, the bill provides for the development and expansion of access to community services and supports to meet the unmet needs of persons on the community services waiting list, those persons in developmental centers whose interdisciplinary teams have made recommendations for community placement and who choose such placement, youth with developmental disabilities to transition to the adult system in a seamless and timely manner, and persons with developmental disabilities who are residing with their families.
The bill shifts financial and human resources from the State developmental centers and, instead, uses these resources to strengthen and expand community-based services, supports, and residential options to address unmet need by consolidating and closing developmental centers retaining one each in the northern and southern regions of the State within five years of the bill's effective date.
To make these changes, the bill establishes: the "Community Services and Support for Persons with Developmental Disabilities Bridge Fund"; the Community Services Planning Council for Persons with Developmental Disabilities in DHS which would create an implementation plan; and a steering committee to oversee the implementation of the plan.
The fund would be established in the Department of the Treasury as a nonlapsing, revolving fund which would be the repository for moneys generated by:
* the amount of Capital Construction funds appropriated for Other State Projects and Energy Efficiencies - Statewide Projects, which are intended to fund capital projects at the State developmental centers, excluding capital project costs that: will result in a reduction in overall operational expenditures at developmental centers; are required for life safety or environmental enhancements at developmental centers; are required as a condition of licensure, accreditation, or receipt of federal Medicaid reimbursement; or are required as part of an agreement between the State and the federal Department of Justice;
* fiscal year 2009 and each successive fiscal year through the end of fiscal year 2013 savings by DDD in "salaries and wages expenditures" due to reductions in overtime expenditures;
* fiscal year 2009 community care waiver federal financial participation funds received in excess of the amount identified in the appropriations act, as modified by the Governor's recommended budget for fiscal year 2010 and each successive fiscal year through the end of fiscal year 2013;
* reductions in developmental center operational costs achieved through consolidation in the first year and each subsequent year;
* proceeds achieved through the sale of developmental centers, to be utilized in accordance with the provisions of section 5 of P.L.1997, c.258 (C.30:4-177.57) (for capital and equipment costs associated with the development of community placement); and
* unspent funds from DDD's fiscal year 2009 budget and each successive fiscal year through the end of fiscal year 2013.
The bill specifies that the moneys in the fund would be distributed in a planned and expedient manner, through a request for proposal or other purchasing model that utilizes contract systems which promote timely access to services and supports. The moneys would be used to:
* build service capacity and expand access to certain services and supports in the community, as listed in the bill;
* establish a moratorium on future placements in developmental centers, except for court-ordered placements or in instances of imminent danger to life/safety; and concurrently develop, strengthen and expand community-based services, supports, and residential options to meet emergency needs;
* consolidate, downsize, and reduce reliance on developmental centers;
* afford the workforce of current developmental centers the opportunity for early retirement or alternate workplace opportunities within the State, including, but not limited to, employment at the consolidated developmental centers or at other State institutions;
* redeploy staff positions from developmental centers in a staff without walls approach that retains state status to regional or county assignments that support community-based services systems, fill gaps in regional and county operations, including but not limited to community casemanagent, specialty care such as occupational therapy, physical therapy, and medical, dental and other health related services, and address gaps in professional and direct care positions in the community;
* meet the unmet needs of persons on the community services waiting list in order to: reduce continued growth of the waiting list; avert the need for emergency out-of-home placement in a developmental center; and support persons with developmental disabilities who live with their families and afford them quality, engaged lives in the community, while also providing stability to families caring for loved ones at home;
* provide a seamless transition for young adults with developmental disabilities who are leaving the education system but are in need of continuing services and supports; and
* maximize available federal funds and direct those funds toward community-based services.
The Community Services Planning Council for Persons with Developmental Disabilities established under the bill would consist of 17 members as follows:
-- the Commissioner of Human Services and the State Treasurer, or their designees; the Assistant Commissioner of the Division of Developmental Disabilities in the Department of Human Services; and the chairs of the Assembly Budget and Human Services Committees and of the Senate Budget and Appropriations and Health, Human Services and Senior Citizens Committees, or their designees, who shall serve ex officio; and
-- 10 public members, to be appointed by the Commissioner of Human Services, as follows: two advocates for persons with developmental disabilities who are persons living with developmental disabilities, two family members of persons receiving services from DDD who have transitioned to community living from a developmental center, a representative from the Family Education Project in the School of Public Health in the University of Medicine and Dentistry of New Jersey, a representative from the New Jersey Association of Community Providers, a representative from the Autistic Self Advocacy Network, a representative from Advocates for Alternatives, Inc., a representative from a labor union, and a recognized national expert on developmental disabilities, public policy, and systems design and development.
The council is required to create a preliminary and comprehensive implementation plan that would:
* provide an overall strategy for the reduction of the population in the developmental centers by 80% within five years of the bill's effective date, and for the reduction in the number of developmental centers to one each in the northern and southern regions of the State;
* provide for the transfer into the community of persons with developmental disabilities residing in the developmental centers whose interdisciplinary teams have made recommendations for community placement and who choose such placement;
* provide details about the reduction, transition, and redeployment of the workforce, and of the downsizing and sale of developmental centers, which shall include the ongoing costs for preparing for the sale of developmental centers and a fiscal analysis of the redirection of funds to support community living;
* provide details about: the development and expansion of community services, supports, and residential options to meet the unmet needs of persons on the community services waiting list; the moratorium on future placements in developmental centers and the needs of persons in the developmental centers who will remain in a developmental center; the needs of youth with developmental disabilities to transition to the adult system in a seamless and timely manner; and support services to persons with developmental disabilities who are residing with their families;
* specify clear procedures for accomplishing the tasks necessary to carry out the provisions of the bill, and define positions of responsibility to accomplish these tasks in a timely, effective, and efficient manner;
* specify measureable objectives, and benchmarks and timeframes for meeting those objectives within five years of the bill's effective date;
* stipulate the use of moneys in the fund to strengthen and expand access to community services and supports; and
* specify a timetable and funding necessary to shift resources from institutional to community support.
The bill requires the council to submit the plan, which shall include a minority report, if applicable, to the Governor and Legislature within 180 days of the date of organization of the council.
In addition, the steering committee, established under the bill to monitor the plan's implementation, would consist of not more than 30 members and would include:
-- the members of the council; and
-- other members appointed by the Commissioner of Human Services as follows: the deputy and assistant directors or regional administrators of DDD, or both, who shall serve ex officio; representatives from developmental disabilities community provider organizations; and persons with developmental disabilities who are residing in the developmental centers or are on the community services waiting list, or their family members, or both.
Lastly, the bill requires the Commissioner of Human Services to provide quarterly progress reports on the development and implementation of the plan to the Governor and the Legislature.
--
Ari Ne'eman
President
The Autistic Self Advocacy Network
The bill shifts financial and human resources from the State developmental centers and, instead, uses these resources to strengthen and expand community-based services, supports, and residential options to address unmet need by consolidating and closing developmental centers retaining one each in the northern and southern regions of the State within five years of the bill's effective date.
To make these changes, the bill establishes: the "Community Services and Support for Persons with Developmental Disabilities Bridge Fund"; the Community Services Planning Council for Persons with Developmental Disabilities in DHS which would create an implementation plan; and a steering committee to oversee the implementation of the plan.
The fund would be established in the Department of the Treasury as a nonlapsing, revolving fund which would be the repository for moneys generated by:
* the amount of Capital Construction funds appropriated for Other State Projects and Energy Efficiencies - Statewide Projects, which are intended to fund capital projects at the State developmental centers, excluding capital project costs that: will result in a reduction in overall operational expenditures at developmental centers; are required for life safety or environmental enhancements at developmental centers; are required as a condition of licensure, accreditation, or receipt of federal Medicaid reimbursement; or are required as part of an agreement between the State and the federal Department of Justice;
* fiscal year 2009 and each successive fiscal year through the end of fiscal year 2013 savings by DDD in "salaries and wages expenditures" due to reductions in overtime expenditures;
* fiscal year 2009 community care waiver federal financial participation funds received in excess of the amount identified in the appropriations act, as modified by the Governor's recommended budget for fiscal year 2010 and each successive fiscal year through the end of fiscal year 2013;
* reductions in developmental center operational costs achieved through consolidation in the first year and each subsequent year;
* proceeds achieved through the sale of developmental centers, to be utilized in accordance with the provisions of section 5 of P.L.1997, c.258 (C.30:4-177.57) (for capital and equipment costs associated with the development of community placement); and
* unspent funds from DDD's fiscal year 2009 budget and each successive fiscal year through the end of fiscal year 2013.
The bill specifies that the moneys in the fund would be distributed in a planned and expedient manner, through a request for proposal or other purchasing model that utilizes contract systems which promote timely access to services and supports. The moneys would be used to:
* build service capacity and expand access to certain services and supports in the community, as listed in the bill;
* establish a moratorium on future placements in developmental centers, except for court-ordered placements or in instances of imminent danger to life/safety; and concurrently develop, strengthen and expand community-based services, supports, and residential options to meet emergency needs;
* consolidate, downsize, and reduce reliance on developmental centers;
* afford the workforce of current developmental centers the opportunity for early retirement or alternate workplace opportunities within the State, including, but not limited to, employment at the consolidated developmental centers or at other State institutions;
* redeploy staff positions from developmental centers in a staff without walls approach that retains state status to regional or county assignments that support community-based services systems, fill gaps in regional and county operations, including but not limited to community casemanagent, specialty care such as occupational therapy, physical therapy, and medical, dental and other health related services, and address gaps in professional and direct care positions in the community;
* meet the unmet needs of persons on the community services waiting list in order to: reduce continued growth of the waiting list; avert the need for emergency out-of-home placement in a developmental center; and support persons with developmental disabilities who live with their families and afford them quality, engaged lives in the community, while also providing stability to families caring for loved ones at home;
* provide a seamless transition for young adults with developmental disabilities who are leaving the education system but are in need of continuing services and supports; and
* maximize available federal funds and direct those funds toward community-based services.
The Community Services Planning Council for Persons with Developmental Disabilities established under the bill would consist of 17 members as follows:
-- the Commissioner of Human Services and the State Treasurer, or their designees; the Assistant Commissioner of the Division of Developmental Disabilities in the Department of Human Services; and the chairs of the Assembly Budget and Human Services Committees and of the Senate Budget and Appropriations and Health, Human Services and Senior Citizens Committees, or their designees, who shall serve ex officio; and
-- 10 public members, to be appointed by the Commissioner of Human Services, as follows: two advocates for persons with developmental disabilities who are persons living with developmental disabilities, two family members of persons receiving services from DDD who have transitioned to community living from a developmental center, a representative from the Family Education Project in the School of Public Health in the University of Medicine and Dentistry of New Jersey, a representative from the New Jersey Association of Community Providers, a representative from the Autistic Self Advocacy Network, a representative from Advocates for Alternatives, Inc., a representative from a labor union, and a recognized national expert on developmental disabilities, public policy, and systems design and development.
The council is required to create a preliminary and comprehensive implementation plan that would:
* provide an overall strategy for the reduction of the population in the developmental centers by 80% within five years of the bill's effective date, and for the reduction in the number of developmental centers to one each in the northern and southern regions of the State;
* provide for the transfer into the community of persons with developmental disabilities residing in the developmental centers whose interdisciplinary teams have made recommendations for community placement and who choose such placement;
* provide details about the reduction, transition, and redeployment of the workforce, and of the downsizing and sale of developmental centers, which shall include the ongoing costs for preparing for the sale of developmental centers and a fiscal analysis of the redirection of funds to support community living;
* provide details about: the development and expansion of community services, supports, and residential options to meet the unmet needs of persons on the community services waiting list; the moratorium on future placements in developmental centers and the needs of persons in the developmental centers who will remain in a developmental center; the needs of youth with developmental disabilities to transition to the adult system in a seamless and timely manner; and support services to persons with developmental disabilities who are residing with their families;
* specify clear procedures for accomplishing the tasks necessary to carry out the provisions of the bill, and define positions of responsibility to accomplish these tasks in a timely, effective, and efficient manner;
* specify measureable objectives, and benchmarks and timeframes for meeting those objectives within five years of the bill's effective date;
* stipulate the use of moneys in the fund to strengthen and expand access to community services and supports; and
* specify a timetable and funding necessary to shift resources from institutional to community support.
The bill requires the council to submit the plan, which shall include a minority report, if applicable, to the Governor and Legislature within 180 days of the date of organization of the council.
In addition, the steering committee, established under the bill to monitor the plan's implementation, would consist of not more than 30 members and would include:
-- the members of the council; and
-- other members appointed by the Commissioner of Human Services as follows: the deputy and assistant directors or regional administrators of DDD, or both, who shall serve ex officio; representatives from developmental disabilities community provider organizations; and persons with developmental disabilities who are residing in the developmental centers or are on the community services waiting list, or their family members, or both.
Lastly, the bill requires the Commissioner of Human Services to provide quarterly progress reports on the development and implementation of the plan to the Governor and the Legislature.
--
Ari Ne'eman
President
The Autistic Self Advocacy Network
Summary of NJ De-institutionalization Bill A3625
This bill changes the way in which the Division of Developmental Disabilities (DDD) in the Department of Human Services (DHS) will use resources to provide services to persons with developmental disabilities by reducing the division's reliance on developmental centers and strengthening and expanding community based services and supports. Instead of investing a disproportionate share of the division's budget to support an inappropriate level of care through the State's seven developmental centers, the bill provides for the development and expansion of access to community services and supports to meet the unmet needs of persons on the community services waiting list, those persons in developmental centers whose interdisciplinary teams have made recommendations for community placement and who choose such placement, youth with developmental disabilities to transition to the adult system in a seamless and timely manner, and persons with developmental disabilities who are residing with their families.
The bill shifts financial and human resources from the State developmental centers and, instead, uses these resources to strengthen and expand community-based services, supports, and residential options to address unmet need by consolidating and closing developmental centers retaining one each in the northern and southern regions of the State within five years of the bill's effective date.
To make these changes, the bill establishes: the "Community Services and Support for Persons with Developmental Disabilities Bridge Fund"; the Community Services Planning Council for Persons with Developmental Disabilities in DHS which would create an implementation plan; and a steering committee to oversee the implementation of the plan.
The fund would be established in the Department of the Treasury as a nonlapsing, revolving fund which would be the repository for moneys generated by:
* the amount of Capital Construction funds appropriated for Other State Projects and Energy Efficiencies - Statewide Projects, which are intended to fund capital projects at the State developmental centers, excluding capital project costs that: will result in a reduction in overall operational expenditures at developmental centers; are required for life safety or environmental enhancements at developmental centers; are required as a condition of licensure, accreditation, or receipt of federal Medicaid reimbursement; or are required as part of an agreement between the State and the federal Department of Justice;
* fiscal year 2009 and each successive fiscal year through the end of fiscal year 2013 savings by DDD in "salaries and wages expenditures" due to reductions in overtime expenditures;
* fiscal year 2009 community care waiver federal financial participation funds received in excess of the amount identified in the appropriations act, as modified by the Governor's recommended budget for fiscal year 2010 and each successive fiscal year through the end of fiscal year 2013;
* reductions in developmental center operational costs achieved through consolidation in the first year and each subsequent year;
* proceeds achieved through the sale of developmental centers, to be utilized in accordance with the provisions of section 5 of P.L.1997, c.258 (C.30:4-177.57) (for capital and equipment costs associated with the development of community placement); and
* unspent funds from DDD's fiscal year 2009 budget and each successive fiscal year through the end of fiscal year 2013.
The bill specifies that the moneys in the fund would be distributed in a planned and expedient manner, through a request for proposal or other purchasing model that utilizes contract systems which promote timely access to services and supports. The moneys would be used to:
* build service capacity and expand access to certain services and supports in the community, as listed in the bill;
* establish a moratorium on future placements in developmental centers, except for court-ordered placements or in instances of imminent danger to life/safety; and concurrently develop, strengthen and expand community-based services, supports, and residential options to meet emergency needs;
* consolidate, downsize, and reduce reliance on developmental centers;
* afford the workforce of current developmental centers the opportunity for early retirement or alternate workplace opportunities within the State, including, but not limited to, employment at the consolidated developmental centers or at other State institutions;
* redeploy staff positions from developmental centers in a staff without walls approach that retains state status to regional or county assignments that support community-based services systems, fill gaps in regional and county operations, including but not limited to community casemanagent, specialty care such as occupational therapy, physical therapy, and medical, dental and other health related services, and address gaps in professional and direct care positions in the community;
* meet the unmet needs of persons on the community services waiting list in order to: reduce continued growth of the waiting list; avert the need for emergency out-of-home placement in a developmental center; and support persons with developmental disabilities who live with their families and afford them quality, engaged lives in the community, while also providing stability to families caring for loved ones at home;
* provide a seamless transition for young adults with developmental disabilities who are leaving the education system but are in need of continuing services and supports; and
* maximize available federal funds and direct those funds toward community-based services.
The Community Services Planning Council for Persons with Developmental Disabilities established under the bill would consist of 17 members as follows:
-- the Commissioner of Human Services and the State Treasurer, or their designees; the Assistant Commissioner of the Division of Developmental Disabilities in the Department of Human Services; and the chairs of the Assembly Budget and Human Services Committees and of the Senate Budget and Appropriations and Health, Human Services and Senior Citizens Committees, or their designees, who shall serve ex officio; and
-- 10 public members, to be appointed by the Commissioner of Human Services, as follows: two advocates for persons with developmental disabilities who are persons living with developmental disabilities, two family members of persons receiving services from DDD who have transitioned to community living from a developmental center, a representative from the Family Education Project in the School of Public Health in the University of Medicine and Dentistry of New Jersey, a representative from the New Jersey Association of Community Providers, a representative from the Autistic Self Advocacy Network, a representative from Advocates for Alternatives, Inc., a representative from a labor union, and a recognized national expert on developmental disabilities, public policy, and systems design and development.
The council is required to create a preliminary and comprehensive implementation plan that would:
* provide an overall strategy for the reduction of the population in the developmental centers by 80% within five years of the bill's effective date, and for the reduction in the number of developmental centers to one each in the northern and southern regions of the State;
* provide for the transfer into the community of persons with developmental disabilities residing in the developmental centers whose interdisciplinary teams have made recommendations for community placement and who choose such placement;
* provide details about the reduction, transition, and redeployment of the workforce, and of the downsizing and sale of developmental centers, which shall include the ongoing costs for preparing for the sale of developmental centers and a fiscal analysis of the redirection of funds to support community living;
* provide details about: the development and expansion of community services, supports, and residential options to meet the unmet needs of persons on the community services waiting list; the moratorium on future placements in developmental centers and the needs of persons in the developmental centers who will remain in a developmental center; the needs of youth with developmental disabilities to transition to the adult system in a seamless and timely manner; and support services to persons with developmental disabilities who are residing with their families;
* specify clear procedures for accomplishing the tasks necessary to carry out the provisions of the bill, and define positions of responsibility to accomplish these tasks in a timely, effective, and efficient manner;
* specify measureable objectives, and benchmarks and timeframes for meeting those objectives within five years of the bill's effective date;
* stipulate the use of moneys in the fund to strengthen and expand access to community services and supports; and
* specify a timetable and funding necessary to shift resources from institutional to community support.
The bill requires the council to submit the plan, which shall include a minority report, if applicable, to the Governor and Legislature within 180 days of the date of organization of the council.
In addition, the steering committee, established under the bill to monitor the plan's implementation, would consist of not more than 30 members and would include:
-- the members of the council; and
-- other members appointed by the Commissioner of Human Services as follows: the deputy and assistant directors or regional administrators of DDD, or both, who shall serve ex officio; representatives from developmental disabilities community provider organizations; and persons with developmental disabilities who are residing in the developmental centers or are on the community services waiting list, or their family members, or both.
Lastly, the bill requires the Commissioner of Human Services to provide quarterly progress reports on the development and implementation of the plan to the Governor and the Legislature.
--
Ari Ne'eman
President
The Autistic Self Advocacy Network
The bill shifts financial and human resources from the State developmental centers and, instead, uses these resources to strengthen and expand community-based services, supports, and residential options to address unmet need by consolidating and closing developmental centers retaining one each in the northern and southern regions of the State within five years of the bill's effective date.
To make these changes, the bill establishes: the "Community Services and Support for Persons with Developmental Disabilities Bridge Fund"; the Community Services Planning Council for Persons with Developmental Disabilities in DHS which would create an implementation plan; and a steering committee to oversee the implementation of the plan.
The fund would be established in the Department of the Treasury as a nonlapsing, revolving fund which would be the repository for moneys generated by:
* the amount of Capital Construction funds appropriated for Other State Projects and Energy Efficiencies - Statewide Projects, which are intended to fund capital projects at the State developmental centers, excluding capital project costs that: will result in a reduction in overall operational expenditures at developmental centers; are required for life safety or environmental enhancements at developmental centers; are required as a condition of licensure, accreditation, or receipt of federal Medicaid reimbursement; or are required as part of an agreement between the State and the federal Department of Justice;
* fiscal year 2009 and each successive fiscal year through the end of fiscal year 2013 savings by DDD in "salaries and wages expenditures" due to reductions in overtime expenditures;
* fiscal year 2009 community care waiver federal financial participation funds received in excess of the amount identified in the appropriations act, as modified by the Governor's recommended budget for fiscal year 2010 and each successive fiscal year through the end of fiscal year 2013;
* reductions in developmental center operational costs achieved through consolidation in the first year and each subsequent year;
* proceeds achieved through the sale of developmental centers, to be utilized in accordance with the provisions of section 5 of P.L.1997, c.258 (C.30:4-177.57) (for capital and equipment costs associated with the development of community placement); and
* unspent funds from DDD's fiscal year 2009 budget and each successive fiscal year through the end of fiscal year 2013.
The bill specifies that the moneys in the fund would be distributed in a planned and expedient manner, through a request for proposal or other purchasing model that utilizes contract systems which promote timely access to services and supports. The moneys would be used to:
* build service capacity and expand access to certain services and supports in the community, as listed in the bill;
* establish a moratorium on future placements in developmental centers, except for court-ordered placements or in instances of imminent danger to life/safety; and concurrently develop, strengthen and expand community-based services, supports, and residential options to meet emergency needs;
* consolidate, downsize, and reduce reliance on developmental centers;
* afford the workforce of current developmental centers the opportunity for early retirement or alternate workplace opportunities within the State, including, but not limited to, employment at the consolidated developmental centers or at other State institutions;
* redeploy staff positions from developmental centers in a staff without walls approach that retains state status to regional or county assignments that support community-based services systems, fill gaps in regional and county operations, including but not limited to community casemanagent, specialty care such as occupational therapy, physical therapy, and medical, dental and other health related services, and address gaps in professional and direct care positions in the community;
* meet the unmet needs of persons on the community services waiting list in order to: reduce continued growth of the waiting list; avert the need for emergency out-of-home placement in a developmental center; and support persons with developmental disabilities who live with their families and afford them quality, engaged lives in the community, while also providing stability to families caring for loved ones at home;
* provide a seamless transition for young adults with developmental disabilities who are leaving the education system but are in need of continuing services and supports; and
* maximize available federal funds and direct those funds toward community-based services.
The Community Services Planning Council for Persons with Developmental Disabilities established under the bill would consist of 17 members as follows:
-- the Commissioner of Human Services and the State Treasurer, or their designees; the Assistant Commissioner of the Division of Developmental Disabilities in the Department of Human Services; and the chairs of the Assembly Budget and Human Services Committees and of the Senate Budget and Appropriations and Health, Human Services and Senior Citizens Committees, or their designees, who shall serve ex officio; and
-- 10 public members, to be appointed by the Commissioner of Human Services, as follows: two advocates for persons with developmental disabilities who are persons living with developmental disabilities, two family members of persons receiving services from DDD who have transitioned to community living from a developmental center, a representative from the Family Education Project in the School of Public Health in the University of Medicine and Dentistry of New Jersey, a representative from the New Jersey Association of Community Providers, a representative from the Autistic Self Advocacy Network, a representative from Advocates for Alternatives, Inc., a representative from a labor union, and a recognized national expert on developmental disabilities, public policy, and systems design and development.
The council is required to create a preliminary and comprehensive implementation plan that would:
* provide an overall strategy for the reduction of the population in the developmental centers by 80% within five years of the bill's effective date, and for the reduction in the number of developmental centers to one each in the northern and southern regions of the State;
* provide for the transfer into the community of persons with developmental disabilities residing in the developmental centers whose interdisciplinary teams have made recommendations for community placement and who choose such placement;
* provide details about the reduction, transition, and redeployment of the workforce, and of the downsizing and sale of developmental centers, which shall include the ongoing costs for preparing for the sale of developmental centers and a fiscal analysis of the redirection of funds to support community living;
* provide details about: the development and expansion of community services, supports, and residential options to meet the unmet needs of persons on the community services waiting list; the moratorium on future placements in developmental centers and the needs of persons in the developmental centers who will remain in a developmental center; the needs of youth with developmental disabilities to transition to the adult system in a seamless and timely manner; and support services to persons with developmental disabilities who are residing with their families;
* specify clear procedures for accomplishing the tasks necessary to carry out the provisions of the bill, and define positions of responsibility to accomplish these tasks in a timely, effective, and efficient manner;
* specify measureable objectives, and benchmarks and timeframes for meeting those objectives within five years of the bill's effective date;
* stipulate the use of moneys in the fund to strengthen and expand access to community services and supports; and
* specify a timetable and funding necessary to shift resources from institutional to community support.
The bill requires the council to submit the plan, which shall include a minority report, if applicable, to the Governor and Legislature within 180 days of the date of organization of the council.
In addition, the steering committee, established under the bill to monitor the plan's implementation, would consist of not more than 30 members and would include:
-- the members of the council; and
-- other members appointed by the Commissioner of Human Services as follows: the deputy and assistant directors or regional administrators of DDD, or both, who shall serve ex officio; representatives from developmental disabilities community provider organizations; and persons with developmental disabilities who are residing in the developmental centers or are on the community services waiting list, or their family members, or both.
Lastly, the bill requires the Commissioner of Human Services to provide quarterly progress reports on the development and implementation of the plan to the Governor and the Legislature.
--
Ari Ne'eman
President
The Autistic Self Advocacy Network
Comments To Be Given Today at Press Conference on NJ De-Institutionalization Bill A3625
Although this is a New Jersey initiative, it's very important and so I will be adding several posts to the NOVA blog.
--
Comments To Be Given Today at Press Conference on NJ De-Institutionalization Bill A3625
Ten years ago, the Supreme Court of the United States of America ruled that it wasn't a crime to have a disability. Today, we launch an effort to make the reality in New Jersey match that ruling. New Jersey's current overuse of institutions has left thousands of individuals with developmental disabilities locked away and thousands more on waiting lists. As a self-advocate running an organization of adults and youth on the autism spectrum, the Autistic Self-Advocacy Network, I feel this issue is one of great personal importance. Our people have been locked away for ages in conditions that often challenge the very idea of civilization. The history of disability policy over the last thirty years has been a story of constant struggles for greater inclusion, greater support, greater access, greater rights and greater opportunities for our people. Through the introduction of this legislation, we take a step forward in the spirit of that history to end a system whereby individuals have no choice but to live apart from their families, their homes and their communities.
One of the things that I find most impressive about this initiative is that it is supported by representatives from every major group in the disability community: parents, providers and people with disabilities ourselves all understand the importance of freeing our people from unnecessary and all too often abusive institutional settings. Let us be clear: this is not merely a bureaucratic reshuffling of how service-delivery occurs – it is a realization of one of the most crucial human rights issues of our time: the right of individuals with disabilities not to be segregated and marginalized but instead to be included and supported throughout society. The message that we send through supporting balancing our service-delivery infrastructure to support community services is that people with disabilities can, with the right support, succeed in being recognized as full members of our communities and citizens in our society. I'd like to thank Assemblymen Greenwald and the groups here today for their support of a better future for people with disabilities.
Thank you and Free Our People.
--
Ari Ne'eman
President
The Autistic Self Advocacy Network
--
Comments To Be Given Today at Press Conference on NJ De-Institutionalization Bill A3625
Ten years ago, the Supreme Court of the United States of America ruled that it wasn't a crime to have a disability. Today, we launch an effort to make the reality in New Jersey match that ruling. New Jersey's current overuse of institutions has left thousands of individuals with developmental disabilities locked away and thousands more on waiting lists. As a self-advocate running an organization of adults and youth on the autism spectrum, the Autistic Self-Advocacy Network, I feel this issue is one of great personal importance. Our people have been locked away for ages in conditions that often challenge the very idea of civilization. The history of disability policy over the last thirty years has been a story of constant struggles for greater inclusion, greater support, greater access, greater rights and greater opportunities for our people. Through the introduction of this legislation, we take a step forward in the spirit of that history to end a system whereby individuals have no choice but to live apart from their families, their homes and their communities.
One of the things that I find most impressive about this initiative is that it is supported by representatives from every major group in the disability community: parents, providers and people with disabilities ourselves all understand the importance of freeing our people from unnecessary and all too often abusive institutional settings. Let us be clear: this is not merely a bureaucratic reshuffling of how service-delivery occurs – it is a realization of one of the most crucial human rights issues of our time: the right of individuals with disabilities not to be segregated and marginalized but instead to be included and supported throughout society. The message that we send through supporting balancing our service-delivery infrastructure to support community services is that people with disabilities can, with the right support, succeed in being recognized as full members of our communities and citizens in our society. I'd like to thank Assemblymen Greenwald and the groups here today for their support of a better future for people with disabilities.
Thank you and Free Our People.
--
Ari Ne'eman
President
The Autistic Self Advocacy Network
Wednesday, December 31, 2008
JLARC autism study-ASAN comments
The Autistic Self Advocacy Network-VA sent this comment to Virginia’s Joint Legislative Audit and Review Commission (JLARC). JLARC is conducting a study of autism services in the state.
---
The Autistic Self Advocacy Network appreciates the Joint Legislative Audit and Review Commission (JLARC) opportunity to address the state of autism services in Virginia.
In general, a main factor that impacts the ability of Virginians on the autism spectrum to access services is the lack of a central location online, or agency-based clearinghouse to access information about services. Information about autism and developmental disability-related services and programs is not disseminated from any central location.
Adults on the autism spectrum may need accommodations in order to access information about services, and the services themselves. Some options include online information access in a single location. Information should include housing options, health care access, and assistance in navigating various agencies and systems, since often the amount of information, paperwork, phone calls, etc. can preclude someone being able to access assistance effectively, if at all. Families of adults on the autism spectrum often also need access to information about available services. The EasyAccess site does provide some information but a search of that site does not provide autism-specific information that could be useful to parents and people on the autism spectrum.
The VA Board for People with Disabilities or another DD agency should have an online portal specifically for autism, and also dedicated staff, to ensure that families, and individuals on the autism spectrum, are able to obtain accurate and timely information.
Key services needed:
Housing:
Alternatives to group homes, ICF/MRs and institutions. Put more money into the hands of people on the autism spectrum and families rather than shoring up aging institutions. Virginia is one of only three states that has closed no institutions. The DD and MR waiver wait lists are years long. Consider public-private initiatives. Housing considerations should include: accessibility to public transportation, safety considerations, affordability, and availability of support personnel if needed.
In addition, the lack of accessible, affordable housing is a major barrier to independent living.
Health care access for age 21 and over:
Adults on the autism spectrum need access to medical services, including appointment-making assistance, help with identification of health needs, preventative health care, and training of medical personnel including office staff, so that access is more likely and more effective.
Identify, develop, and disseminate "autism-friendly" physicians' practices, with such accommodations as online scheduling, some assistance with insurance claims, and the like. This could be a pilot project with input from people on the autism spectrum. A current community-based research project by The Academic Autistic Spectrum Project in Research and Education is studying health care access issues. Utilize findings from this study (when available) in order to determine health care needs and access
needs of adults on the autism spectrum. (http://www.aaspireproject.org)
Personal assistance services (PAs) are needed by some individuals on the autism spectrum, both children, and adults who have aged out of education and health insurance systems. The Autistic Self Advocacy Network recommends training of appropriate service personnel, with input from autistic adults, who will have the most informed ideas about what kinds of care they need.
Assistive technology access:
Information about assistive technology, including assistive and augmentive communication devices available, funding sources, and state insurance requirements. Information and links to assistive technology information sites, and decisionmaking options (not just sites that actively sell assistive and augmentive communication devices) should be provided at the central location we recommend.
Employment options:
Training of employers and co-workers so that more people on the autism spectrum can be placed in situations that will work for both the employee and the employer. Suggestions include an information brochure for employers who are identified as wanting to participate in an assisted employment program. Input from adults and
teens on the autism spectrum as to needs in the workplace is crucial.
Job counseling for individuals on the autism spectrum. The job counseling should be individualized and tailored to the individual’s needs and understanding about employment options. Job counseling should not follow stereotyped assumptions about what jobs or employment situations are appropriate for people on the autism spectrum. Again, input from and consultation with autistic adults can be invaluable.
Transportation:
Many teens and adults on the autism spectrum do not drive, yet have transportation needs for employment, health care, personal, and recreation needs. Increasing the types of transportation available, both fixed-time and route and on-demand services, is crucial for full integration into the community. In addition, some adults may need assistance with understanding bus schedules and other forms of transportation so as to be able to access available transportation. One model, which takes into account such issues as sensory differences, is the United Kingdom’s Disabled Persons Transport Advisory Committee. This committee works to address barriers to accessibility, including the training of transportation staff in awareness of various disabilities and how they impact users of public transportation.
Transition supports:
Under the Individuals with Disabilities Education Act, students with disabilities who have Individualized Education Plans must receive a plan for transition by age 16. However, Virginia state law mandates that such a plan be implemented by age 14. This earlier age for transition planning should be kept in place. In addition, to facilitate effective transition planning, the state should work to integrate the adult services infrastructures, such as Vocational Rehabilitation, Community Living and similar service-delivery systems, with the transition process in Virginia high schools. Experiential learning options have been shown to have a positive impact on student transition and should be incorporated into student IEPs in a way that works with the unique strengths of autistic students. Furthermore, Virginia must work to increase the number of students on the autism spectrum who will have access to higher education opportunities. As students with disabilities in the post-IDEA infrastructure sometimes require documentation to qualify for ADA accommodations in higher education and the workplace, Virginia should institute a requirement that schools offer parents the opportunity to receive new, current educational testing prior to graduation, in order to ensure students leave school with the necessary materials for accessing their legal rights in the post-IDEA infrastructure.
Adequacy of autism service delivery system:
Diagnoses of young children: Some publications in the state of Virginia geared toward newly diagnosed children are unnecessarily alarmist. A quote from the first sentence in a packet from on of the major diagnostic clinics: "Parents are devastated when they learn of an autism diagnosis." This leaves no room for parents to have other reactions, and has been off-putting in some cases, leading parents to look elsewhere for information. Diagnoses should stick to known facts about autism spectrum conditions.
Diagnosticians should consult with parents, families, and individuals on the spectrum as to the best ways of disseminating information about diagnoses. The Autistic Self
Advocacy Network currently consults with parents of newly diagnosed children to provide alternative, and more affirming views of autism without neglecting the very real challenges that families and individuals on the spectrum face.
Public school services:
Training of aides and teaching assistants in understanding of autism spectrum conditions. In addition to knowledge about behaviors, consult with adults on the autism spectrum for information about why behaviors occur. Consultation with adults on the autism spectrum, who are necessarily more familiar with the needs of autistic persons than anyone else, should be a preferred source of information on this matter.
Strategies like Positive Behavioral Supports should be developed and implemented
throughout all school districts. Pilot programs can be developed in several districts and then disseminated throughout the entire state.
There is no regulation or oversight regarding the use of restraints and seclusion time-outs for children with special needs, including autism, in Virginia public schools. The only document is the 2005 "Guidelines for the Development of Policies and Procedures for
Managing Student Behaviors in Emergency Situations in Virginia Schools Focusing on Physical Restraint and Seclusion."
The preface to the document asserts: "These guidelines are informational and are neither mandated nor required." Without adequate regulation and legislation regarding the use of restraints and seclusion, children, particularly those with special needs, including autism, are at risk for being subject to abuse of restraint devices and seclusion rooms.
Adequacy of coordination of services over entire lifetime:
Many parents and individuals on the autism spectrum feel that once they age out of the school system, there are few services, and the services there are, are not accessible. Parent advocates and self-advocates are creating their own programs (one source is graduates of VBPD's Partners in Policymaking program) to fill in the gaps in supported
employment, housing, community day programs, and others.
Even with dedicated efforts by individual advocates and organizations, state-level and/or public-private initiatives (with oversight) need to be in place. Children who are on the autism spectrum now will grow into adulthood as autistic individuals, many with some remaining degree of disability. Services and supports need to be in place and ongoing for future generations of Virginians with developmental disabilities. The Autistic Self Advocacy Network has a growing network of consultants on the autism spectrum who can assist with development of programs, including public policy advocacy, outreach to media, educational consulting, and social and support groups and networks.
---
The Autistic Self Advocacy Network appreciates the Joint Legislative Audit and Review Commission (JLARC) opportunity to address the state of autism services in Virginia.
In general, a main factor that impacts the ability of Virginians on the autism spectrum to access services is the lack of a central location online, or agency-based clearinghouse to access information about services. Information about autism and developmental disability-related services and programs is not disseminated from any central location.
Adults on the autism spectrum may need accommodations in order to access information about services, and the services themselves. Some options include online information access in a single location. Information should include housing options, health care access, and assistance in navigating various agencies and systems, since often the amount of information, paperwork, phone calls, etc. can preclude someone being able to access assistance effectively, if at all. Families of adults on the autism spectrum often also need access to information about available services. The EasyAccess site does provide some information but a search of that site does not provide autism-specific information that could be useful to parents and people on the autism spectrum.
The VA Board for People with Disabilities or another DD agency should have an online portal specifically for autism, and also dedicated staff, to ensure that families, and individuals on the autism spectrum, are able to obtain accurate and timely information.
Key services needed:
Housing:
Alternatives to group homes, ICF/MRs and institutions. Put more money into the hands of people on the autism spectrum and families rather than shoring up aging institutions. Virginia is one of only three states that has closed no institutions. The DD and MR waiver wait lists are years long. Consider public-private initiatives. Housing considerations should include: accessibility to public transportation, safety considerations, affordability, and availability of support personnel if needed.
In addition, the lack of accessible, affordable housing is a major barrier to independent living.
Health care access for age 21 and over:
Adults on the autism spectrum need access to medical services, including appointment-making assistance, help with identification of health needs, preventative health care, and training of medical personnel including office staff, so that access is more likely and more effective.
Identify, develop, and disseminate "autism-friendly" physicians' practices, with such accommodations as online scheduling, some assistance with insurance claims, and the like. This could be a pilot project with input from people on the autism spectrum. A current community-based research project by The Academic Autistic Spectrum Project in Research and Education is studying health care access issues. Utilize findings from this study (when available) in order to determine health care needs and access
needs of adults on the autism spectrum. (http://www.aaspireproject.org)
Personal assistance services (PAs) are needed by some individuals on the autism spectrum, both children, and adults who have aged out of education and health insurance systems. The Autistic Self Advocacy Network recommends training of appropriate service personnel, with input from autistic adults, who will have the most informed ideas about what kinds of care they need.
Assistive technology access:
Information about assistive technology, including assistive and augmentive communication devices available, funding sources, and state insurance requirements. Information and links to assistive technology information sites, and decisionmaking options (not just sites that actively sell assistive and augmentive communication devices) should be provided at the central location we recommend.
Employment options:
Training of employers and co-workers so that more people on the autism spectrum can be placed in situations that will work for both the employee and the employer. Suggestions include an information brochure for employers who are identified as wanting to participate in an assisted employment program. Input from adults and
teens on the autism spectrum as to needs in the workplace is crucial.
Job counseling for individuals on the autism spectrum. The job counseling should be individualized and tailored to the individual’s needs and understanding about employment options. Job counseling should not follow stereotyped assumptions about what jobs or employment situations are appropriate for people on the autism spectrum. Again, input from and consultation with autistic adults can be invaluable.
Transportation:
Many teens and adults on the autism spectrum do not drive, yet have transportation needs for employment, health care, personal, and recreation needs. Increasing the types of transportation available, both fixed-time and route and on-demand services, is crucial for full integration into the community. In addition, some adults may need assistance with understanding bus schedules and other forms of transportation so as to be able to access available transportation. One model, which takes into account such issues as sensory differences, is the United Kingdom’s Disabled Persons Transport Advisory Committee. This committee works to address barriers to accessibility, including the training of transportation staff in awareness of various disabilities and how they impact users of public transportation.
Transition supports:
Under the Individuals with Disabilities Education Act, students with disabilities who have Individualized Education Plans must receive a plan for transition by age 16. However, Virginia state law mandates that such a plan be implemented by age 14. This earlier age for transition planning should be kept in place. In addition, to facilitate effective transition planning, the state should work to integrate the adult services infrastructures, such as Vocational Rehabilitation, Community Living and similar service-delivery systems, with the transition process in Virginia high schools. Experiential learning options have been shown to have a positive impact on student transition and should be incorporated into student IEPs in a way that works with the unique strengths of autistic students. Furthermore, Virginia must work to increase the number of students on the autism spectrum who will have access to higher education opportunities. As students with disabilities in the post-IDEA infrastructure sometimes require documentation to qualify for ADA accommodations in higher education and the workplace, Virginia should institute a requirement that schools offer parents the opportunity to receive new, current educational testing prior to graduation, in order to ensure students leave school with the necessary materials for accessing their legal rights in the post-IDEA infrastructure.
Adequacy of autism service delivery system:
Diagnoses of young children: Some publications in the state of Virginia geared toward newly diagnosed children are unnecessarily alarmist. A quote from the first sentence in a packet from on of the major diagnostic clinics: "Parents are devastated when they learn of an autism diagnosis." This leaves no room for parents to have other reactions, and has been off-putting in some cases, leading parents to look elsewhere for information. Diagnoses should stick to known facts about autism spectrum conditions.
Diagnosticians should consult with parents, families, and individuals on the spectrum as to the best ways of disseminating information about diagnoses. The Autistic Self
Advocacy Network currently consults with parents of newly diagnosed children to provide alternative, and more affirming views of autism without neglecting the very real challenges that families and individuals on the spectrum face.
Public school services:
Training of aides and teaching assistants in understanding of autism spectrum conditions. In addition to knowledge about behaviors, consult with adults on the autism spectrum for information about why behaviors occur. Consultation with adults on the autism spectrum, who are necessarily more familiar with the needs of autistic persons than anyone else, should be a preferred source of information on this matter.
Strategies like Positive Behavioral Supports should be developed and implemented
throughout all school districts. Pilot programs can be developed in several districts and then disseminated throughout the entire state.
There is no regulation or oversight regarding the use of restraints and seclusion time-outs for children with special needs, including autism, in Virginia public schools. The only document is the 2005 "Guidelines for the Development of Policies and Procedures for
Managing Student Behaviors in Emergency Situations in Virginia Schools Focusing on Physical Restraint and Seclusion."
The preface to the document asserts: "These guidelines are informational and are neither mandated nor required." Without adequate regulation and legislation regarding the use of restraints and seclusion, children, particularly those with special needs, including autism, are at risk for being subject to abuse of restraint devices and seclusion rooms.
Adequacy of coordination of services over entire lifetime:
Many parents and individuals on the autism spectrum feel that once they age out of the school system, there are few services, and the services there are, are not accessible. Parent advocates and self-advocates are creating their own programs (one source is graduates of VBPD's Partners in Policymaking program) to fill in the gaps in supported
employment, housing, community day programs, and others.
Even with dedicated efforts by individual advocates and organizations, state-level and/or public-private initiatives (with oversight) need to be in place. Children who are on the autism spectrum now will grow into adulthood as autistic individuals, many with some remaining degree of disability. Services and supports need to be in place and ongoing for future generations of Virginians with developmental disabilities. The Autistic Self Advocacy Network has a growing network of consultants on the autism spectrum who can assist with development of programs, including public policy advocacy, outreach to media, educational consulting, and social and support groups and networks.
Friday, November 14, 2008
ASAN signs letter to Governor Kaine
The Autistic Self Advocacy Network is a signatory to this Virginia Coalition for Students with Disabilities letter to the Governor of Virginia. The letter requests an opportunity to directly discuss significant concerns about the proposed Special Education Regulations changes with Governor Kaine. The proposed regulations contain major changes that would reduce or eliminate broad categories of protections for parents and students.
-----
November 6, 2008
Dear Governor Kaine:
Thank you for reaffirming your promise during your recent appearance on WTOP's recent "Ask the Governor" program not to reduce existing parental involvement in the proposed special education regulations. In doing so, you raised the hopes of parents across Virginia that misguided efforts to take away rights from parents of children with disabilities – rights that are vital to ensuring equality and fairness in the parent-school partnership – will not succeed.
We are extremely disappointed that the recently approved regulations reduce parent involvement and consent rights in disregard of the desires expressed in your memo of March 21, 2008 to the Board of Education. With regard to the specific measures you identified, the regulations fail to ensure the right of consent for parents of transfer students and the right to participate in a Functional Behavioral Assessment of their child. You also stated your intention in the memo that parent involvement not be reduced in other areas. However, these final proposed regulations continue to:
Deny parents the right to participate in the referral and screening process through the elimination of "Child Study Committees" as well as required state-wide uniform procedures and timelines.
Deny parents the right to receive timely re-evaluation reports due to the approval of an unnecessary extension of the timeline.
Deny children with disabilities access to appropriate services due to new restrictive and arbitrary eligibility criteria.
Deny young children with disabilities access to appropriate services due to new limits on the label of "developmental delay".
Deny parents the right to ensure the inclusion of short-term objectives or benchmarks in their children's IEPs.
We know that some supporters of the recently approved regulations are arguing that they constitute a reasonable compromise between saving money and serving children. This is untrue. The proposed regulations cannot be considered a reasonable compromise when only one party loses rights and the other party gains them. Worst of all, the losers in this situation are Virginia's most vulnerable children. For your further review we have attached a full list of all areas where changes in the proposed regulations roll back current rights and protections for children.
Parents have contacted you not to ask for new rights and protections, but to advocate for retaining the rights they now have. These are rights that have well served children with disabilities for decades and have no justifiable reason for being eliminated. Certainly, denying services to children who need them will not save money, but will shift the burden for meeting their needs onto unprepared teachers and overstretched schools. Such an approach will only negatively impact classroom instruction, teacher retention, and state performance on standardized tests, while increasing suspension/expulsion rates and leaving many children with disabilities unprepared to face the challenges of adult life.
The proposed regulations represent a significant policy shift for Virginia. If these regulations are approved in their current form, an entire class of citizens in Virginia will lose rights for the first time in over 20 years. Instead of ensuring that Virginia leads the way as you have championed, these regulations will put the Commonwealth years behind by taking away the hard won gains of children with disabilities.
We request an opportunity to directly discuss these significant concerns with you. Please let us know a date and time when you might be available to meet. The individual futures of tens of thousands of Virginia's most vulnerable children are truly at stake and require your direct intervention.
Sincerely,
Maureen Hollowell
Attachment: Comments from the Virginia Coalition for Students with Disabilities on the proposed Regulations Governing Special Education Programs for Children with Disabilities in Virginia
Access Independence, Inc
403 B Loudoun Street
Winchester, VA 22601
Contact: Donald Price, Executive Director
Email: askai@accessindependence.org
Appalachian Independence Center,Inc.
230 Charwood Drive
Abingdon, VA 24210
Contact: Greg Morrell, Executive Director
Email: gmorrell@naxs.net
The Arc of Loudoun
71 Lawson Road
P.O. Box 243
Leesburg, VA 20178
Contact: Eleanor Voldish, Executive Director
Email: Eleanor@thearcofloudoun.org
The Arc of Northern Virginia
98 N. Washington StreetFalls Church, VA 22046Contact: Nancy Mercer, Executive DirectorEmail: nmercer@thearcofnova.org
The Arc of Rappahannock
1640 B Lafayette Boulevard
Fredericksburg, VA 22401
Contact: Jan Griffin, Executive Director
Email: exec@arcr.vacoxmail.com
The Arc of Virginia2025 E. Main Street, Suite 107Richmond, VA 23223Contact: Jamie Trosclair, Executive Director
Email: jtrosclair@arcofva.org
The Autistic Self Advocacy Network (ASAN)
1660 L Street, NW, Suite 700
Washington, DC 20036
Contact: Paula C. Durbin-Westby, Board of Directors Virginia CoordinatorEmail: pdurbinwestby@gmail.com
Autism Society of American – Central Virginia
P.O. Box 29364Richmond, VA 23242-0364
Contact: Bradford Hulcher
Email: asacv@aol.com
Autism Society of America – Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Christopher Waddell, President
Email: acwaddell@gmail.com
A Voice for GAP Kids
P.O. Box 174
Rockville, Virginia 23146
Contact: Tim Moore
Email: tim@voiceforgapkids.com
Blue Ridge Independent Living
1502 B Williamson Road NE
Roanoke, VA 24012
Contact: Karen Michalski-Karney, Executive Director
Email: kmichalski@brilc.org
Clinch Independent Living Services
P.O. Box 2741
Grundy, VA 24614
Contact: Betty Bevins, Executive Director
Email: bbevins@vmmicro.net
DAC (disabled Action committee)14405 Artery Lane, #11Dale City, VA 22193Contact: Keith Kessler
Email: DAC4VA@aol.com
disAbility Resource Center
409 Progress Street
Fredericksburg, VA 22401
Contact: Debe Fults, Executive Director
Email: dfults@cildrc.org
Disabilities Resource Network
c/o Bedford Community Resource Center
403 Otey Street
Bedford, VA 24523
Contact: Didi Zaryczny, Chairperson of the Board of Directors
Email: didizautism@aol.com
Down Syndrome Association of Hampton Roads
6300 E. Virginia Beach Boulevard
Virginia Beach, VA 23502
Contact: Andrea Anderson
Email: dsahr@verizon.net
Down Syndrome Association of Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Philip Pedlikin, President
Email: philip.pedlikin@plateau.com
Eastern Shore Center for Independent Living
4364 Lankford Highway
Exmore, VA 23350
Contact: Althea Pittman, Executive Director
Email: altheapittman@yahoo.com
Endependence Center
6300 E. Virginia Beach Boulevard
Norfolk, VA 23502Contact: Maureen Hollowell
Email: mhollowell@endependence.org
ENDependence Center of Northern Virginia, Inc.
3100 Clarendon Blvd.
Arlington, VA 22201
Contact: David Burds, Director
Email: davidb@ecnv.org
The Fairfax County Council of PTAs (FCCPTA)
8115 Gatehouse Road
Falls Church, VA 22042
Contact: Sheree Brown Kaplan, Chair, FCCPTA Special Education Committee
Email: specialedchair@fccpta.org
Giraffe Program
529 Ramsey Ridge
Clinchco, VA 24226
Contact: Judy McKinney
Email: ambercounts@localnet.com
Independence Empowerment Center
9001 Digges Road, Suite 103
Manassas, VA 20110
Contact: Mary D. Lopez, Ph.D., Executive Director
Email: mlopez@ieccil.org
Independent Resource Center
815 Cherry Avenue
Charlottesville, VA 22903
Contact: Tom Vandever, Executive Director
Email: tvandever@ntelos.net
Junction Center for Independent Living
P.O. Box 1210
Norton, VA 24273
Contact: Dennis Horton, Executive Director
Email: jcil@junctioncenter.org
Learning Disabilities Association of Virginia (LDAV)
3914 Monument Avenue
Richmond, VA 23230-3902
Contact: Dr. Jean Lokerson, President
Email: jlokerso@vcu.edu
Lynchburg Area Center for Independent Living
500 Alleghany Avenue, Suite 520
Lynchburg, VA 24501
Contact: Phil Theisen, Executive Director
Email: Phil@lacil.org
Parents in Partnership
18301 Black Hollow Rd.
Abingdon, VA 24210
Contact: Melissa Meade
Email: mameade@ntelos.net
Peninsula Center for Independent Living Insight Enterprises, Inc
2021 A Cunningham Drive Suite 2
Hampton, VA 23666
Contact: Ralph Shelman, Executive Director
Email: Rshelman@iepcil.org
Resources for Independent Living
4009 Fitzhugh Avenue
Richmond, VA 23230
Contact: Sandra Wagener, Executive Director
Email: wageners@cavtel.net
Tidewater Autism Society of America
6300 E. Virginia Beach Boulevard
Norfolk, VA 23502
Contact: JoAnna Bryant, President
Email: tidewaterasa@verizon.net
Valley Associates for Independent Living205-B South Liberty StreetHarrisonburg, VA 22801
Contact: Marcia DuBois, Executive DirectorEmail: vail@govail.org
Virginia Board for People with Disabilities202 N. 9th Street, 9th FloorRichmond, VA 23219
Contact: Heidi Lawyer, Executive Director
Email: Heidi.lawyer@VBPD.virginia.gov
Virginia Office for Protection and Advocacy1910 Byrd Avenue, Suite 5Richmond, VA 23230Contact person: Julie Kegley, Staff AttorneyEmail: Julie.Kegley@vopa.virginia.gov
-----
November 6, 2008
Dear Governor Kaine:
Thank you for reaffirming your promise during your recent appearance on WTOP's recent "Ask the Governor" program not to reduce existing parental involvement in the proposed special education regulations. In doing so, you raised the hopes of parents across Virginia that misguided efforts to take away rights from parents of children with disabilities – rights that are vital to ensuring equality and fairness in the parent-school partnership – will not succeed.
We are extremely disappointed that the recently approved regulations reduce parent involvement and consent rights in disregard of the desires expressed in your memo of March 21, 2008 to the Board of Education. With regard to the specific measures you identified, the regulations fail to ensure the right of consent for parents of transfer students and the right to participate in a Functional Behavioral Assessment of their child. You also stated your intention in the memo that parent involvement not be reduced in other areas. However, these final proposed regulations continue to:
Deny parents the right to participate in the referral and screening process through the elimination of "Child Study Committees" as well as required state-wide uniform procedures and timelines.
Deny parents the right to receive timely re-evaluation reports due to the approval of an unnecessary extension of the timeline.
Deny children with disabilities access to appropriate services due to new restrictive and arbitrary eligibility criteria.
Deny young children with disabilities access to appropriate services due to new limits on the label of "developmental delay".
Deny parents the right to ensure the inclusion of short-term objectives or benchmarks in their children's IEPs.
We know that some supporters of the recently approved regulations are arguing that they constitute a reasonable compromise between saving money and serving children. This is untrue. The proposed regulations cannot be considered a reasonable compromise when only one party loses rights and the other party gains them. Worst of all, the losers in this situation are Virginia's most vulnerable children. For your further review we have attached a full list of all areas where changes in the proposed regulations roll back current rights and protections for children.
Parents have contacted you not to ask for new rights and protections, but to advocate for retaining the rights they now have. These are rights that have well served children with disabilities for decades and have no justifiable reason for being eliminated. Certainly, denying services to children who need them will not save money, but will shift the burden for meeting their needs onto unprepared teachers and overstretched schools. Such an approach will only negatively impact classroom instruction, teacher retention, and state performance on standardized tests, while increasing suspension/expulsion rates and leaving many children with disabilities unprepared to face the challenges of adult life.
The proposed regulations represent a significant policy shift for Virginia. If these regulations are approved in their current form, an entire class of citizens in Virginia will lose rights for the first time in over 20 years. Instead of ensuring that Virginia leads the way as you have championed, these regulations will put the Commonwealth years behind by taking away the hard won gains of children with disabilities.
We request an opportunity to directly discuss these significant concerns with you. Please let us know a date and time when you might be available to meet. The individual futures of tens of thousands of Virginia's most vulnerable children are truly at stake and require your direct intervention.
Sincerely,
Maureen Hollowell
Attachment: Comments from the Virginia Coalition for Students with Disabilities on the proposed Regulations Governing Special Education Programs for Children with Disabilities in Virginia
Access Independence, Inc
403 B Loudoun Street
Winchester, VA 22601
Contact: Donald Price, Executive Director
Email: askai@accessindependence.org
Appalachian Independence Center,Inc.
230 Charwood Drive
Abingdon, VA 24210
Contact: Greg Morrell, Executive Director
Email: gmorrell@naxs.net
The Arc of Loudoun
71 Lawson Road
P.O. Box 243
Leesburg, VA 20178
Contact: Eleanor Voldish, Executive Director
Email: Eleanor@thearcofloudoun.org
The Arc of Northern Virginia
98 N. Washington StreetFalls Church, VA 22046Contact: Nancy Mercer, Executive DirectorEmail: nmercer@thearcofnova.org
The Arc of Rappahannock
1640 B Lafayette Boulevard
Fredericksburg, VA 22401
Contact: Jan Griffin, Executive Director
Email: exec@arcr.vacoxmail.com
The Arc of Virginia2025 E. Main Street, Suite 107Richmond, VA 23223Contact: Jamie Trosclair, Executive Director
Email: jtrosclair@arcofva.org
The Autistic Self Advocacy Network (ASAN)
1660 L Street, NW, Suite 700
Washington, DC 20036
Contact: Paula C. Durbin-Westby, Board of Directors Virginia CoordinatorEmail: pdurbinwestby@gmail.com
Autism Society of American – Central Virginia
P.O. Box 29364Richmond, VA 23242-0364
Contact: Bradford Hulcher
Email: asacv@aol.com
Autism Society of America – Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Christopher Waddell, President
Email: acwaddell@gmail.com
A Voice for GAP Kids
P.O. Box 174
Rockville, Virginia 23146
Contact: Tim Moore
Email: tim@voiceforgapkids.com
Blue Ridge Independent Living
1502 B Williamson Road NE
Roanoke, VA 24012
Contact: Karen Michalski-Karney, Executive Director
Email: kmichalski@brilc.org
Clinch Independent Living Services
P.O. Box 2741
Grundy, VA 24614
Contact: Betty Bevins, Executive Director
Email: bbevins@vmmicro.net
DAC (disabled Action committee)14405 Artery Lane, #11Dale City, VA 22193Contact: Keith Kessler
Email: DAC4VA@aol.com
disAbility Resource Center
409 Progress Street
Fredericksburg, VA 22401
Contact: Debe Fults, Executive Director
Email: dfults@cildrc.org
Disabilities Resource Network
c/o Bedford Community Resource Center
403 Otey Street
Bedford, VA 24523
Contact: Didi Zaryczny, Chairperson of the Board of Directors
Email: didizautism@aol.com
Down Syndrome Association of Hampton Roads
6300 E. Virginia Beach Boulevard
Virginia Beach, VA 23502
Contact: Andrea Anderson
Email: dsahr@verizon.net
Down Syndrome Association of Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Philip Pedlikin, President
Email: philip.pedlikin@plateau.com
Eastern Shore Center for Independent Living
4364 Lankford Highway
Exmore, VA 23350
Contact: Althea Pittman, Executive Director
Email: altheapittman@yahoo.com
Endependence Center
6300 E. Virginia Beach Boulevard
Norfolk, VA 23502Contact: Maureen Hollowell
Email: mhollowell@endependence.org
ENDependence Center of Northern Virginia, Inc.
3100 Clarendon Blvd.
Arlington, VA 22201
Contact: David Burds, Director
Email: davidb@ecnv.org
The Fairfax County Council of PTAs (FCCPTA)
8115 Gatehouse Road
Falls Church, VA 22042
Contact: Sheree Brown Kaplan, Chair, FCCPTA Special Education Committee
Email: specialedchair@fccpta.org
Giraffe Program
529 Ramsey Ridge
Clinchco, VA 24226
Contact: Judy McKinney
Email: ambercounts@localnet.com
Independence Empowerment Center
9001 Digges Road, Suite 103
Manassas, VA 20110
Contact: Mary D. Lopez, Ph.D., Executive Director
Email: mlopez@ieccil.org
Independent Resource Center
815 Cherry Avenue
Charlottesville, VA 22903
Contact: Tom Vandever, Executive Director
Email: tvandever@ntelos.net
Junction Center for Independent Living
P.O. Box 1210
Norton, VA 24273
Contact: Dennis Horton, Executive Director
Email: jcil@junctioncenter.org
Learning Disabilities Association of Virginia (LDAV)
3914 Monument Avenue
Richmond, VA 23230-3902
Contact: Dr. Jean Lokerson, President
Email: jlokerso@vcu.edu
Lynchburg Area Center for Independent Living
500 Alleghany Avenue, Suite 520
Lynchburg, VA 24501
Contact: Phil Theisen, Executive Director
Email: Phil@lacil.org
Parents in Partnership
18301 Black Hollow Rd.
Abingdon, VA 24210
Contact: Melissa Meade
Email: mameade@ntelos.net
Peninsula Center for Independent Living Insight Enterprises, Inc
2021 A Cunningham Drive Suite 2
Hampton, VA 23666
Contact: Ralph Shelman, Executive Director
Email: Rshelman@iepcil.org
Resources for Independent Living
4009 Fitzhugh Avenue
Richmond, VA 23230
Contact: Sandra Wagener, Executive Director
Email: wageners@cavtel.net
Tidewater Autism Society of America
6300 E. Virginia Beach Boulevard
Norfolk, VA 23502
Contact: JoAnna Bryant, President
Email: tidewaterasa@verizon.net
Valley Associates for Independent Living205-B South Liberty StreetHarrisonburg, VA 22801
Contact: Marcia DuBois, Executive DirectorEmail: vail@govail.org
Virginia Board for People with Disabilities202 N. 9th Street, 9th FloorRichmond, VA 23219
Contact: Heidi Lawyer, Executive Director
Email: Heidi.lawyer@VBPD.virginia.gov
Virginia Office for Protection and Advocacy1910 Byrd Avenue, Suite 5Richmond, VA 23230Contact person: Julie Kegley, Staff AttorneyEmail: Julie.Kegley@vopa.virginia.gov
Wednesday, October 1, 2008
ASAN Coalition comments on IACC Strategic Plan
ASAN and other autism and disability rights organizations submitted the following joint comment yesterday to the Interagency Autism Coordinating Committee:
The Autistic Self Advocacy Network Coalition Comments on
Interagency Autism Coordinating Committee
Request for Information NOT-MH-08-021
September 30, 2008
This joint comment on the Draft Strategic Plan is submitted by The Autistic Self Advocacy Network and the undersigned organizations. Our combined organizations collectively represent thousands of citizens with disabilities, including individuals on the autism spectrum, as well as well as family members, professionals and other allies of citizens on the autism spectrum.
The Autistic Self Advocacy Network aims to empower autistic people across the lifespan, by focusing on supports, service delivery, and education research. As such, we have an interest in the inclusion of autistic adults in all aspects of IACC’s decision-making process, research topic selection, research design and research implementation.
The Autistic Self Advocacy Network applauds the efforts of the IACC to develop a Strategic Plan that will address the needs and concerns of individuals on the autism spectrum and our families. We are especially encouraged by the invitation extended by IACC members to listen to the viewpoint of autistic people, because our viewpoint frequently departs from the traditional concern with causes, cures, and prevention of all autism spectrum conditions.
The Autistic Self Advocacy Network and our supporting organizations suggest several areas of concern to be addressed in the draft Strategic Plan:
1. All federally-funded researchers must consider the impact that their research will have on autistic citizens’ human rights, their dignity, and the quality of their lives, from prenatal life forward.
Research focused on early detection and intervention, prevention/preemption, pharmaceutical interventions, prenatal treatments, and the like needs to be conducted with the human dignity and rights of the individual as the foremost concerns.
2. Implement a research agenda that addresses services and supports for people on the autism spectrum throughout the lifespan. Change the emphasis of research away from prevention and cure and toward effective supports for community inclusion.
Currently (as of May 12, 2008), only 1% of NIMH’s $127 million budget for autism research addresses the area of services and support. More resources should be allocated to this area. We share the committee’s “sense of urgency” when we speak about quality-of-life issues for people on the autism spectrum, such as education, employment, and housing needs.
For example, a more aggressive agenda must be pursued for researching alternative and augmentative communication technology and other assistive communication technologies. The only augmentive/alternative communication technology mentioned in the Strategic Plan is PECS; however, PECS is not always appropriate or even useful to many people on the autism spectrum, particularly for those with visual processing difficulties, or those who need more sophisticated assistive technologies. Lower-cost communications devices need to be researched and tested to enable more people on the autism spectrum to communicate with their families and communities. New modes of alternative communication and augmentive communication that take advantage of autistic individuals’ processing strengths and state-of-the-art technology should be pursued.
Interventions other than Applied Behavior Analysis must be studied. Because research on ABA has shown only limited positive outcomes, other methods must be studied, keeping in mind the heterogeneity of the autistic population. Not all people on the autism spectrum will respond positively to a single approach. As Dr. Catherine Lord of the University of Michigan Center for Human Growth and Development says, in her Omnibus Autism Proceedings testimony, “We know that behavioral treatments make some difference but it’s a relatively small amount of difference.”
Emphasis should also be placed on identifying the optimal and often unique ways that autistic people think, learn, communicate, and remember. Such research will help parents of autistic children and professionals who work with autistic children to better understand and meet those children’s’ needs. Examples from other areas illustrate this concept: Hearing parents of deaf children are often well served by learning to sign. Sighted parents of blind children are often well served by learning to read Braille. The same principle applies to parents of autistic children; parents deserve attention and intervention alongside their children. Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.
Longitudinal studies that address quality-of-life and satisfaction-with-life issues need to be undertaken, including research on access and utilization of services in community settings. Research into living arrangements, employment options, relations within the community, guardianship questions, and other aspects of daily life need to be conducted. These are the issues we consider to be of greatest urgency.
3. Conduct research into unique strengths of autistic individuals and positive experiences of living with autism.
Much research and fundraising language emphasizes “costs to society” and uses the disrespectful rhetoric of “burden.” The National Center on Disability and Journalism strongly recommends against describing persons with disabilities, or their disabilities, as burdens because “portraying [persons] with disabilities as a burden to family, friends, and society can dehumanize them.” We strongly agree.
Similarly, many NIH-funded researchers and staff speak of autism as “a devastating disorder.” However, many individuals on the autism spectrum do not feel that they are leading lives that are less worthy or more filled with suffering than those of other citizens. Moreover, a growing body of research literature demonstrates that the autistic spectrum profile can be accurately characterized by documented strengths, including the ability to focus on details and qualities such as intense interests, which can sometimes be channeled into productive employment. Research must also address education of the public, including parents, about traits that are often seen as “impairments,” but which, in reality, are often innocuous or compensatory mechanisms.
4. Require that individuals on the autism spectrum be actively involved as collaborators and participants on all IACC subcommittees.
Most of the recent IACC workgroups, including the treatment and services workgroup, did not have adequate participation from members on the autism spectrum. If future workgroups are convened, every attempt must be made to include autistic individuals in more than a token way. Comparisons can be made to other fields in which persons affected by the research are involved in the research, such as deaf scientists who study deaf language and culture. As MacArthur Fellowship recipient Harlan Lane articulated with regard to deaf research: “…involve deaf people themselves at all levels of the undertaking. Federal agencies ... should require the projects they sponsor to turn preferentially to the deaf community for advisers and collaborators in research design and implementation, for assistance in data collection and analysis, for guidance in interpretation of results.” We strongly recommend that the federal agencies that fund autism research endorse this socially responsible position and mandate the involvement of individuals on the autism spectrum in all aspects of the research process.
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530
Andrew Imparato
American Association of People with Disabilities
1629 K Street NW, Suite 503 Washington, DC 20006
Barbara Trader, MS Executive Director TASH
http://www.tash.org/
Sharisa Joy Kochmeister,
President
Autism National Committee
Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project
http://www.taaproject.com/
Compiled by ASAN Board Member Paula C. Durbin-Westby
The Autistic Self Advocacy Network Coalition Comments on
Interagency Autism Coordinating Committee
Request for Information NOT-MH-08-021
September 30, 2008
This joint comment on the Draft Strategic Plan is submitted by The Autistic Self Advocacy Network and the undersigned organizations. Our combined organizations collectively represent thousands of citizens with disabilities, including individuals on the autism spectrum, as well as well as family members, professionals and other allies of citizens on the autism spectrum.
The Autistic Self Advocacy Network aims to empower autistic people across the lifespan, by focusing on supports, service delivery, and education research. As such, we have an interest in the inclusion of autistic adults in all aspects of IACC’s decision-making process, research topic selection, research design and research implementation.
The Autistic Self Advocacy Network applauds the efforts of the IACC to develop a Strategic Plan that will address the needs and concerns of individuals on the autism spectrum and our families. We are especially encouraged by the invitation extended by IACC members to listen to the viewpoint of autistic people, because our viewpoint frequently departs from the traditional concern with causes, cures, and prevention of all autism spectrum conditions.
The Autistic Self Advocacy Network and our supporting organizations suggest several areas of concern to be addressed in the draft Strategic Plan:
1. All federally-funded researchers must consider the impact that their research will have on autistic citizens’ human rights, their dignity, and the quality of their lives, from prenatal life forward.
Research focused on early detection and intervention, prevention/preemption, pharmaceutical interventions, prenatal treatments, and the like needs to be conducted with the human dignity and rights of the individual as the foremost concerns.
2. Implement a research agenda that addresses services and supports for people on the autism spectrum throughout the lifespan. Change the emphasis of research away from prevention and cure and toward effective supports for community inclusion.
Currently (as of May 12, 2008), only 1% of NIMH’s $127 million budget for autism research addresses the area of services and support. More resources should be allocated to this area. We share the committee’s “sense of urgency” when we speak about quality-of-life issues for people on the autism spectrum, such as education, employment, and housing needs.
For example, a more aggressive agenda must be pursued for researching alternative and augmentative communication technology and other assistive communication technologies. The only augmentive/alternative communication technology mentioned in the Strategic Plan is PECS; however, PECS is not always appropriate or even useful to many people on the autism spectrum, particularly for those with visual processing difficulties, or those who need more sophisticated assistive technologies. Lower-cost communications devices need to be researched and tested to enable more people on the autism spectrum to communicate with their families and communities. New modes of alternative communication and augmentive communication that take advantage of autistic individuals’ processing strengths and state-of-the-art technology should be pursued.
Interventions other than Applied Behavior Analysis must be studied. Because research on ABA has shown only limited positive outcomes, other methods must be studied, keeping in mind the heterogeneity of the autistic population. Not all people on the autism spectrum will respond positively to a single approach. As Dr. Catherine Lord of the University of Michigan Center for Human Growth and Development says, in her Omnibus Autism Proceedings testimony, “We know that behavioral treatments make some difference but it’s a relatively small amount of difference.”
Emphasis should also be placed on identifying the optimal and often unique ways that autistic people think, learn, communicate, and remember. Such research will help parents of autistic children and professionals who work with autistic children to better understand and meet those children’s’ needs. Examples from other areas illustrate this concept: Hearing parents of deaf children are often well served by learning to sign. Sighted parents of blind children are often well served by learning to read Braille. The same principle applies to parents of autistic children; parents deserve attention and intervention alongside their children. Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.
Longitudinal studies that address quality-of-life and satisfaction-with-life issues need to be undertaken, including research on access and utilization of services in community settings. Research into living arrangements, employment options, relations within the community, guardianship questions, and other aspects of daily life need to be conducted. These are the issues we consider to be of greatest urgency.
3. Conduct research into unique strengths of autistic individuals and positive experiences of living with autism.
Much research and fundraising language emphasizes “costs to society” and uses the disrespectful rhetoric of “burden.” The National Center on Disability and Journalism strongly recommends against describing persons with disabilities, or their disabilities, as burdens because “portraying [persons] with disabilities as a burden to family, friends, and society can dehumanize them.” We strongly agree.
Similarly, many NIH-funded researchers and staff speak of autism as “a devastating disorder.” However, many individuals on the autism spectrum do not feel that they are leading lives that are less worthy or more filled with suffering than those of other citizens. Moreover, a growing body of research literature demonstrates that the autistic spectrum profile can be accurately characterized by documented strengths, including the ability to focus on details and qualities such as intense interests, which can sometimes be channeled into productive employment. Research must also address education of the public, including parents, about traits that are often seen as “impairments,” but which, in reality, are often innocuous or compensatory mechanisms.
4. Require that individuals on the autism spectrum be actively involved as collaborators and participants on all IACC subcommittees.
Most of the recent IACC workgroups, including the treatment and services workgroup, did not have adequate participation from members on the autism spectrum. If future workgroups are convened, every attempt must be made to include autistic individuals in more than a token way. Comparisons can be made to other fields in which persons affected by the research are involved in the research, such as deaf scientists who study deaf language and culture. As MacArthur Fellowship recipient Harlan Lane articulated with regard to deaf research: “…involve deaf people themselves at all levels of the undertaking. Federal agencies ... should require the projects they sponsor to turn preferentially to the deaf community for advisers and collaborators in research design and implementation, for assistance in data collection and analysis, for guidance in interpretation of results.” We strongly recommend that the federal agencies that fund autism research endorse this socially responsible position and mandate the involvement of individuals on the autism spectrum in all aspects of the research process.
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530
Andrew Imparato
American Association of People with Disabilities
1629 K Street NW, Suite 503 Washington, DC 20006
Barbara Trader, MS Executive Director TASH
http://www.tash.org/
Sharisa Joy Kochmeister,
President
Autism National Committee
Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project
http://www.taaproject.com/
Compiled by ASAN Board Member Paula C. Durbin-Westby
Subscribe to:
Posts (Atom)
