VOR’s Annual Conference included a State Report Forum. Reports from 15 states were received. Where available, a more detailed report is also linked.
DOJ filed a lawsuit against the Conway Development Center in Jan. 2009 after 6 years of investigation/negotiations. Arkansas is represented by attorney Tom York, and Robin Sims is an expert witness for the state. In May 2010, DOJ filed a separate lawsuit against all 6 development centers in Arkansas claiming the state is out of compliance with the ADA. The Arkansas P&A, like other states, have used our case as a “rallying cry.” On May 18, 2010, Gov. Mike Beebe announced his intention to close the Alexander HDC due to losing Medicaid funding for being out of compliance with CMS, but has vowed to support the other five centers.
Brian Boxall, Board Member (N. CA): Agnews, a state ICFs/MR, was closed after 7 years (2003-2009). The process was well-funded and private service providers were allowed to contract with the state to hire 200 Agnews staff members (allowing staff to retain their state salaries and benefits). Some former residents were transferred to a new medical model home - “962 homes” – developed in preparation of Agnews’ closure. 962 homes are operated with specific nursing standards. The home is owned by a non-profit housing trust which is supervised by the state. Hearings were held to glean lessons learned from the Agnews closure.
Terry DeBell, President of CASHPCR (S. CA): The state’s budget deficit of over $20 billion has presented great challenges. Community services are being cut and Developmental Center (DC) staff have faced mandatory furlough days. There is also a proposal to close Lanterman DC, due to both financial and ideological reasons. The closure must be approved by the legislature. If passed, some residents will transfer to a nearby DC; most will transfer to the community. The development of special medical model homes with augmented staff and services and using Lanterman as an outpatient clinic is proposed.
Lex Wells (S. CA): California has 21 Regional Centers that coordinate care for eligible citizens. The budget crisis is hurting community providers. Cuts include dental and some providers are simply unwilling to accept individuals with challenging needs (including former DC residents) because of the affordability. The DCs are the only safety net the state has for the most severely and profoundly mentally retarded and challenged individuals.
Kathleen Miller / Molly Dillon (N. CA): Some former Agnews residents who were not eligible for 962 homes sought placement at Sonoma Developmental Center (DC) in northern California. Many clients with behavioral challenges have no community alternatives. A state bill, which did not pass, aimed to address this by allowing these individuals to access psychiatric care at Sonoma DC as out-patients. Without the DC as an option, these individuals with MR/DD are at risk of placement in mental health facilities, jail, or even hotel rooms. There also remain aggressive efforts by some Regional Centers to move DC residents with medical needs into community homes, especially in cases where there is not an involved family.
Jack Kosik reported that just days prior to VOR’s Annual Conference a bill to support planned residential communities for people with DD and their families passed the Florida Legislature. Previously, the development of campus-style residential communities were not allowed because Florida law prevented the development of supported living homes within 1,000 feet of each other. Ed Carraway reported that family advocates had also successfully addressed funding challenges associated with providing dental and respite care at developmental centers to non-residents, however promoting the service to eligible individuals and overcoming built-in biases remained a challenge. In other states, a brochure featuring services mailed directly to group homes, helped promote the service.
The Gracewood ICF/MR Family Council meets quarterly and hosts a family picnic every October. In 2009, Julie Huso represented VOR by speaking on issues that are of concern to families like the urgency of keeping the ICFs/MR intact. Efforts continue to organize a statewide family council. Also in October 2009, the Medical College of Georgia took over operation of Gracewood ICFs/MR. This year, the Family Council attended the annual meeting of the Georgia Legislative Black Caucus and raised questions about the Governor’s 2008 decision to close all state ICFs/MR. Ann Knighton filed a complaint with the HHS Office of Civil Rights to protest the Governor’s decision which was made without any family input. This complaint, filed in 2009, is still pending.
The state is in a serious financial crisis. Governor Quinn and the DHS budget has been cut by $125 million, including the community and ICF/MR budget. The Ligas v Maran lawsuit, filed by P&A to close all private ICF/MR, continues.
The 2 state centers, Woodward (WRC) and Glenwood (GRC), recently hired new Directors. Families are optimistic about the new leadership. Since 2008, the number of residents at WRC has decreased by 9.3%, but staff has increased by 1.1%. At GRC, the number of residents has decreased by 6.3%, and staff has increased by 1.6%. Both WRC and GRC have off campus programs which provide HCBS waiver, respite, and training and consultation to allow people to remain in their homes in the community. WRC also has an Autism Resource Team that provides training statewide. Each center also has onsite services by community entities, including their public school districts. At GRC, other nonprofits share space on campus, including hospice groups, county offices, Alegent Health, and Kids Place. In past years, DOJ has investigated WRC and GRC, but ultimately found both to be incompliance with all measures.
Hazelwood ICF/MR, one of three state facilities, will be reducing the number of long term beds for residents in the next few years, but will continue to offer short-term crisis admissions and temporary residential services for individuals with multiple complex medical care needs. A specialized unit for individuals with Down Syndrome and Alzheimer’s dementia has been added. There is a groundbreaking in July for a project to build six additional 4 bed mini ICFs/MR on the Hazelwood campus for residents of another state facility in Louisville. Hazelwood is planning to offer outpatient services to individuals living in the community at a specialty wheelchair clinic and neurology clinic. To assist with this reorganization, there are now transition meetings for residents, and once each month families have the opportunity to meet with providers to explore services other than Hazelwood.
As of April 30, 2010, nearly all state run group homes have been privatized. The remaining 4 will be privatized when providers are located. A budget proposal will reduce by half the six state ICFs/MR by privatizing one and consolidating two. All facilities will also be downsized by 20% by using a new assessment process (SIS/LA Plus). Although the state has pledged its support for ICFs/MR as part of the continuum of care, it seems intent on privatization and downsizing.
Michigan’s budget troubles threaten devastating cuts to the Community Mental Health (CMH) system that serves people with mental illness, substance abuse and DD. Because of this dire situation, there is some support for expanding Medicaid to secure greater federal funds and create jobs. Mount Pleasant Center, a state ICF/MR closed in September 2009, due to pressure from the Arc, P&A and others. Outcomes from this closure are mixed. Some families like having their family member closer, but at least two former residents have died in the last year, some now reside in Caro Psychiatric Hospital, and some have little to do each day. One local CMH board member testified that two former MPC residents are costing them $750,000 per year each and it is not yet known that even at this cost that the setting is appropriate. One provider from another county called the police more than 50 times in one month. Despite these human and financial costs, some state policymakers and advocates continue to push for a state “Vision Statement” that holds that any group setting for persons with DD (e.g., group homes or day programs) is segregating and discriminatory. In response, there is a push for a “Choice Resolution” as part of the Vision, which would recognize the right of individuals to choose from an array of services according to needs and preferences.
The Bellefontaine Habilitation Center (BHC) retained $18,000,000 for renovation, including construction of additional homes on campus. In March, the DOJ reviewed the areas of safety, active treatment, behavior support plans, and transition plans at BHC. In April, BHC passed its federal ICF/MR survey with only a few minor infractions. Recently, families successfully challenged the proposed closures of Nevada and SEMORS Hab Centers. Conversion to waiver homes is a statewide plan that families strongly oppose. The plan is supported by private providers, P&A, DD Council, and others are who working hard to eliminate the ICF/MR option in Missouri. With the current economic difficulties, the promise of saving money by converting ICFs/MR to waiver homes is appealing to legislators. Saving money, not providing services, seems to be the current priority.
New Jersey has 7 ICFs/MR. A state bill (Greenwald) calls for total closure and is motivate by false state claims that 2,400 people want to leave the state centers. Families debunked the myth that nearly all residents want to leave their homes by surveying all legal guardians of all but one center and simply asking these families if they 1) would prefer a community alternative; or 2) prefer the center. 96% of all respondent preferred the center and opposed transition to the community. Families have actively promoted these findings: In February they held a press conference, in March they met with the new Governor, in April they arranged for legislative tours of a center, and in May they helped coordinate a rally at the State Capitol. Families, led by Robin Sims, also successfully challenged policies which required individual planning documents be written in first person, which were misleading with regard to individual abilities and choices.
The Dwyers are VOR’s new New York State Coordinators. They are working to learn more about NY’s system of care, including its ICFs/MR. The NY Office of MR/DD operates 13 DD Services Offices (DDSOs) responsible for providing programs in one or more counties. One resource indicates that there are 7,752 people being served in public and private ICFs/MR with nearly 60% being served in homes with 1-15 people.
Texas still has 13 state ICFs/MR. A DOJ settlement is requiring some center improvements, including better professional staffing (e.g., nurses, physicians, pharmacists) and guardians for every resident. DOJ is preparing baseline evaluations to assess progress, a process that included a teleconference between families, the state and DOJ. Meeting the requirement that each resident have a guardian has proven to be a challenge. Currently only about 50% of all center residents have guardians.
Wisconsin has 2 state ICFs/MR for long-term care, and another for short term placements. There are also 11 county and private ICFs/MR. Recently, 20 private ICFs/MR closed due to lack of adequate payment by the state. In response to being “financially strangled,” private and county ICFs/MR sought an “ICF/MR Preservation Study.” This effort included families, providers and advocacy groups (e.g., People First and P&A). After this study even P&A felt that there were not adequate services to move all people out of ICFs/MR. The State, however, persists, even providing incentive fees to ICF/MR providers who move people out. Oversight of small Adult Family Homes has transitioned from the counties to the State. The union (AFSCME) has been monitoring this transition and working with the state on standards which better address the health care needs of Adult Family Home residents.