Thursday, January 8, 2009

Star Ledger: Assemblyman proposes closing five institutions for developmental disabled

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

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

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

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.
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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