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---------------------------------- Tamie Hopp's new email address is Tamie327@hotmail.com. vor@compuserve.com will be disconnected soon. Notice of address change for dues and donations: As of August 1, 2007, dues and donations should be sent to, VOR, 836 S. Arlington Heights Rd., #351, Elk Grove Village, IL 60007. See http://www.vor.net/staff for additional VOR office locations.
Archived Weekly E-Mail Updates are available at: Archived VOR Weekly News Updates: http://vor.net/Archived%20E-Mails.htm CLICK HERE FOR AN UPDATE RE: THE FAMILY RIGHTS BILL: http://vor.net/HR2839ALERT607.htm ****************************************************************** VOR is the only national organization advocating for a full
range of residential and support options for people with mental
retardation, including Medicaid-certified Intermediate Care
Facilities for the Mentally Retarded (ICFs/MR) and home and
community-based care. VOR supports choice. ===================================================== TABLE OF CONTENTS FOCUS ON STATE NEWS 1. VIRGINIA: Parents' Role Key to Future of CVTC ===================================================== ---------------------------------------------- 1. Parents' Role Key to Future of CVTC ---------------------------------------------- Related News: This letter to the editor appeared in the Sept. 21 edition of Lynchburg News & Advance. Titled ?Protect CVTC?, the author is Randy Lassiter, father of a Central Virginia Training Center resident and long-time VOR member. ?As the parent of a resident at Central Virginia Training Center, I would like to thank The News & Advance for the Sept. 11 editorial about the center. It was one of the more accurate stories written regarding CVTC. One of the most interesting points made by Commissioner James Reinhard at that meeting was one that it now seems that many in attendance didn?t hear or certainly did not pay any attention to. He stated that as some of the older buildings were upgraded, the bed numbers might very well be reduced. This is more of headquarters in Richmond continuing their ?methodology? using ?whatever? and backhanded ways of continuing to attempt to downsize CVTC to 300 beds. The parents and guardians who have worked so hard and diligently for so long to prevent downsizing are more determined than ever to prevent this from happening? Parents' Role Key to Future of CVTC Give credit to concerned parents and others looking out for the best interests of residents at Central Virginia Training Center. They prevailed in their effort to prevent the state from replacing the 500-resident facility for the mentally retarded with a new one designed for only 300 residents. Parents feared that the downsizing to 300 beds would put disabled people into community settings that aren?t prepared for them. The state recently scrapped its proposal to build a new $90 million facility in Madison Heights and has moved on with plans to renovate the center instead. The first of those renovations - a residence hall - will be ready for about 25 residents in October. The building has been under renovation for some time. Upgrading the old building is the first in a series of improvements expected to keep the training center in operation as long as it is needed. Dr. James Reinhard, commissioner of the state department that oversees mental health and mental retardation, was at the center last week to explain how the plan for construction evolved into one for renovation. He described the center as ?one of the state?s most important facilities and one of the largest.? The training center, he said, was one of four institutions at the top of the list the state needed to either replace or renovate. Only one - Eastern State Hospital in Williamsburg - ultimately received money for construction. Plans for the others came to a halt. And why was that? In addition to the ever-present shortage of money, one crucial element that changed planning for the training center here was the fact that 300 beds was not going to be enough. Parents and others had argued from almost the beginning that reducing the population at CVTC would mean finding group homes or other facilities for nearly 200 residents. The training center is among the oldest and largest institutions for mentally retarded people in the United States. It was established in 1910 and now houses about 500 people who are severely or profoundly mentally retarded. About 350 of them rely on wheelchairs and many have serious medical problems in addition to their mental disabilities. The center provides employment for about 1,500. At this point, Reinhard said, the state is looking at what it will take to renovate the entire center. He pointed out that the target number of residents is not as critical with renovation as it is with new construction. With renovation, he said, ?The target is let?s see what?s needed as we go along.? Renovation of the building that will be ready in October has cost about $5 million. State officials said that two other buildings essentially identical to that one are expected to be next on the list at a cost of about $6 million each. Joe Cronin, director of the Office of Architecture and Engineering for the state, said that problems with the more than 50-year-old buildings are fairly typical. Among other things, they lack sprinkler systems and emergency generators, which will be added as the renovations take place. So let the plans for a refurbished and refreshed CVTC move ahead. And one can only hope that the renovations will improve life and the lives at the training center. All of them. ----------------------------------------------------------------------------------- 2. KENTUCKY: Advocates for disabled clash over spending for centers ------------------------------------------------------------------------------------ Related Kentucky News: The Centers for Medicare & Medicaid Services (CMS) recently approved a new Medicaid waiver that will increase Kentucky's ability to provide community services to individuals with intellectual and developmental disabilities through KyHealth Choices. The waiver will expand non-residential community services to 3,000 individuals on the waiting list, and up to 10,000 people. Advocates for disabled clash over spending for centers A long-simmering dispute about how to best serve people with mental disabilities boiled over this week after one advocate proposed closing residential centers and using the savings to help more at home. The debate has alarmed some family members of severely disabled people at residential sites, such as Cedar Lake Lodge in Oldham County or Hazelwood Center in Louisville. "People who don't have this problem don't know what parents go through," said Rose Hodges, 78, who has a daughter at Cedar Lake. "Without the facility, it would be terrible." And it has some advocates calling for a truce, arguing that fighting over how to allocate scarce state funds will not help those they serve. "I truly believe that we have to work together," said April
DuVal, executive director of the Council on Mental Retardation
in Louisville. "If we fight with each other, the people with The debate centers on the idea of "rebalancing" funds so that less money goes to residential centers and more goes for services such as home health, housekeeping and other assistance to help people with mental retardation or other disabilities stay home. The topic has long been a point of contention among various
advocacy groups. It resurfaced this week after a recent e-mail
circulated to supporters of ARMS -- Advocates for Reforming
Medicaid Services. In it, member Cathy Allgood Murphy urged
recipients to ask legislators Murphy suggested writers support phasing out within three years the state's "extremely expensive" system of public and private residential centers that serve about 700 people and cost about $300 to $800 per resident per day to operate. "The monies in the system have to be rebalanced," the e-mail said. Rep. Tom Burch, a Louisville Democrat who is chairman of the House Health and Welfare Committee, said he would oppose any such effort because some residents are too disabled to live at home or in a community setting, such as a group home. "I don't think there's any way we could ever shut these types of facilities down," he said. Jim Richardson, president of Cedar Lake, said he heard from several parents frightened about what would happen to their children if the private, nonprofit center closed. "I've got people who are terribly medically fragile and profoundly disabled and retarded," he said of his residents. Murphy, who also is an advocate for AARP of Kentucky, declined to comment yesterday, referring questions to Jan Day, an ARMS leader and director of the Center for Accessible Living, a Louisville organization that promotes independence for people with disabilities. Day said she's not sure why Murphy's e-mail contained the suggestion about closing residential centers but said that is not the official position of ARMS, a coalition of advocacy groups. Day said ARMS simply wants enough money for community services so people have the option to stay at home rather than enter a residential center or nursing home. "ARMS has always talked about choice," Day said. She said she thinks the debate that erupted in the past week among advocates in a flurry of e-mails, phone calls and other discussions simply reflects the frustration that -- despite years of discussion and planning -- community services have been slow to materialize. DuVal said some advocates who support community services have criticized her organization because it continues to support residential centers for those who need 24-hour medical care and close supervision. But she said the answer isn't to shift money from one service to another. Rather, advocates need to persuade lawmakers to put more resources into serving the thousands of Kentuckians with disabilities. "We need to get more money," she said. "The pie's too small." -------------------------------------------------------------------- 3. NEW JERSEY: Parents fight to get daughter into center -------------------------------------------------------------------- Friday, September 21, 2007 A young woman named Kara Anderson suffers from autism, mental retardation, an inability to speak and a seizure disorder that wracks her body and makes her weak. She also suffers from a bureaucratic runaround. "It's beyond me how the state can treat a child like this," said Kara's mother, Susan Anderson. She lives in Hillsborough. Kara, 18, was granted admission to the Hunterdon Developmental Center in Clinton more than a month ago -- but then the state made it impossible for her to go there. To Susan and Paul Anderson, Kara's father, the placement at
Hunterdon was the best available. So the Andersons found the Hunterdon center, a public facility. But there was a catch, announced only after the young woman was admitted. The placement was contingent on taking Kara off a medication, Frisium, that the Andersons say controlled her seizures for the first time in her life. Frisium, a Canadian drug, is not approved by the U.S. Food and Drug Administration. The Epilepsy Foundation of America lists it as a treatment for seizures, but notes its lack of approval in this country. "I can't take her off Frisium," said Susan Anderson. "What mother would do that?" Susan Anderson said it's the only medication that reduces the frequency of Kara's seizures. She had so many, often dozens a day, that she had to wear a brace with handles so school employees could walk with her, holding her, to keep Kara from falling when she had an episode. "She can do serious damage to herself because she drops straight down to the floor when she has a seizure," said Susan. Frisium can be purchased from pharmacies in Canada and other countries that approve its use. Nurses at Bancroft give it to Kara. The Andersons' dealings with the state and other agencies have angered and frustrated them. "These agencies are always thinking of their exposure to liability," said Susan Anderson. Just weeks after the Hunterdon center said it would admit the young woman, a state official sent the Andersons a letter saying she could come only if she stopped taking Frisium. On July 11, a Bancroft vice president wrote to Jennifer Velez, the state human services commissioner, pleading with her to let Kara go to Hunterdon and continue using Frisium. So far, there has been no answer. Pam Ronan, a spokeswoman for Velez, said the department is looking for another placement for Kara. "We have to be very concerned about administering a drug that the FDA has not approved," said Ronan. "Our staff needs to follow the law." Among other consequences, Ronan said, the state could lose federal funding if it violated FDA procedures. She said Kara cannot go to Hunterdon and have the drug. Private facilities, like Bancroft, don't face such restrictions, she said. --------------------------------------------------------------------------------------- 4. MEDICAID and STATES: Bipartisan children?s health insurance bill (SCHIP) includes provision to delay Medicaid cuts ------------------------------------------------------------------------------------- Summary: The bipartisan children?s health insurance legislation unveiled today contains a provision to help preserve essential health care services for poor children and adults with mental illness or other serious disabilities. The legislation, to be considered by Congress this week, includes a six-month moratorium on Administration plans to institute sweeping Medicaid cuts in services for these individuals. By Judith Solomon On August 13, 2007, the Centers for Medicare and Medicaid Services issued a proposed regulation that would eliminate federal Medicaid funding for important services provided to adults and children with disabilities (particularly those with mental illness), as well as other beneficiaries. The rule would significantly limit states? ability to provide rehabilitative services, including those designed to enable individuals with disabilities to improve their mental or physical capacities.[1] In 2004, some 1.5 million people received rehabilitative services through Medicaid, according to a recent report from the Kaiser Commission on Medicaid and the Uninsured. Nearly every state (47 states plus the District of Columbia) provides rehabilitative services for Medicaid beneficiaries. About three-fourths of the people who receive these rehabilitative services suffer from mental illness.[2] Many states use federal Medicaid funds to help support community-based services for people with mental illness. States also provide rehabilitative services to children with mental illness and other special health care needs in school-based settings. [3] In 2005, the Administration tried ? and failed ? to persuade Congress to restrict rehabilitative services as part of the Deficit Reduction Act.[4] In its last two budgets, the Administration has announced that it intends to restrict these services anyway, bypassing Congress and acting administratively. The most significant change in the proposed rule would prohibit the use of federal Medicaid funds for rehabilitative services that are ?intrinsic elements? of another program, such as foster care or child welfare. The Administration claims that beneficiaries can get the services through the other program, so Medicaid support is not necessary. The reality is very different. In most cases, the other program has limited funds and expects Medicaid to pay for rehabilitative services for Medicaid beneficiaries. Without Medicaid funding, many beneficiaries would simply not receive these health care services. The proposed rule also prohibits the use of federal Medicaid funds for therapeutic foster care, designed for children with serious mental illness. For most children, therapeutic foster care ? in which children are placed in a private home with foster parents who are specially trained to help them improve their condition ? is an alternative to a residential treatment program or psychiatric hospital.[5] Finally, the proposed rule would eliminate coverage for ?day habilitation? programs, which are designed to help people with mental retardation) and other developmental disabilities acquire the skills they need to live in community-based settings. For example, these programs help people with their communication and social skills and maximize their ability to perform activities of everyday life. In 1989, Congress ? concerned about efforts to eliminate Medicaid coverage for day habilitation services ? barred the Secretary of Health and Human Services from restricting such coverage unless the Secretary also specified which of these services could be covered elsewhere in Medicaid. The Administration?s proposed rule does not do that. Instead, it simply eliminates coverage for all day habilitation services, which is likely to cause many vulnerable Medicaid beneficiaries to lose this critical form of assistance. The SCHIP compromise legislation being considered by Congress
this week includes a temporary, six-month moratorium on
restrictions such as these on rehabilitative services, so that
states may continue to provide children and adults with mental
illness or other disabilities with rehabilitative services they
need. If the legislation is not enacted and the Administration
issues a final regulation in coming months to institute these
cutbacks, a large number of the country?s most vulnerable
individuals are likely to face serious consequences. (If the
legislation is enacted, further Congressional action will be
required to protect access to these health care services beyond
the six-month period.)
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VOR * 836 S. Arlington Heights Rd., #351 * Elk Grove Village, Illinois * 60007 877-399-4VOR ph. * 847-258-5273 fax * tamie327@hotmail.com |
