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woodCreve ssantForistellGladstoneIndependenceJenningsKansas CityKirksvilleLake SherwoodLake St. LouisLake WinnebagoLees SummitLexingtonManchesterMoscow MillsMountain ViewOak lleSt. AnnSt. CharlesSt. LouisSt. PetersSpringfieldTroyWarrensburgWashingtonWebster GrovesWentzvilleWildwoodWinfieldThe freeze on long term admissions to Missouri habilitation centers is denying familiesthis choice as required by federal and state law. Habilitation centers do get inquiriesabout services but are referred to the regional offices to be guided into communityplacements only.The Code of Federal Regulations states:441.302 42 CFR Ch. IV (10–1–08 Edition)(d) Alternatives—Assurance that when a recipient is determined to be likely to require the level of careprovided in a hospital, NF, or an ICF/IID , the recipient or his or her legal representativewill be (1) Informed of any feasible alternatives available under the waiver; and(2) given the choice of either institutional or home and community-based services.June 1999 Olmstead decision by the Supreme Court states “This Court emphasizes that nothing in theADA or its implementing regulations condones termination of institutional settings for persons unable to handleor benefit from community settings. Nor is there any federal requirement that community-based treatment beimposed on patients who do not desire it.”The Code of State Regulations (Missouri)9 CSR 45-2.015 Prioritizing Access to Funded Services(C) Division treatment professionals shall determine the following:1. If the individual’s service/support needs can be met in the community;2. If the individual is eligible for the waiver; and3. If the individual chooses waiver services over institutional services.AUGUST 2014PAGE 5WRITTEN TESTIMONY SUBMITTED TO U.S. HOUSE APPROPRIATIONS (excerpts)On March 17, 2014 the following written testimony for the record was submitted to the U.S. HouseAppropriations Committee Subcommittee on Labor, Health and Human Services, Education and RelatedAgencies concerning the 2015 Budget of Department of Health and Human Services.Dear Committee Members on Labor, Health and Human Services, Education and Related Agencies:The opportunity to submit personal testimony to this committee is much appreciated. As HHS budget requestsare being considered, this submission of testimony is a request for a review of the misuse of federal funds bysome HHS programs that promote forced deinstitutionalization of persons with severe and profound intellectualand developmental disabilities. I am grateful that some HHS funds are helping persons with intellectual disabilities. However, in manystates, some of the funds are being misused to promote the closing intermediate care facility for individualswith intellectual disabilities (ICF/IID) homes.These misguided activities by HHS programs negatively affect every part of the daily lives of personsdiagnosed with severe and profound intellectual disabilities, who many times also have multiple physicalimpairments, extreme behavior challenges, and complex medical concerns. These actions are putting thesafety, health, and well-being of our family members at risk. . The Supreme Court 1999 Olmstead ruling states: “It would be unreasonable, it would be a tragic event,then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that states had some

incentive, for fear of litigation to drive those in need of medical care and treatment out of appropriate care andinto settings with too little assistance and supervision.”This is exactly what is happening across the United States by the misuse of some of the HHS funds.Appropriate cost-effective care for those with the severest disabilities is available in ICF/IID homes, and yetthey are targeted for closure, ignoring the educated choice of guardians/family members. Many communitysettings have too little assistance and too little supervision to be appropriate for those with multiple intellectualand physical impairments.I ask each member of this committee to seriously question the funding of those HHS programs that engage inpromoting total deinstitutionalization for persons with intellectual disabilities. Help us keep our family memberssafe and healthy.Respectfully,Mary A. Vitale, *******************CONRESS PASSES BILL H.R. 803 LIMITING SHELTERED WORKSHOP ELIGIBILITYCongress has passed the Workforce Innovation and Opportunity Act. Included in the bill are major changes tothe path from school to work for those with disabilities. The measure prohibits individuals age 24 and youngerfrom working jobs that pay less than the federal minimum of 7.25 per hour unless they first try vocationalrehabilitation services. There are exceptions for those deemed ineligible for vocational rehabilitation and toallow individuals already earning so-called subminimum wage to continue to do so.The legislation also would require state vocational rehabilitation agencies to work with schools to provide preemployment transition services to all students with disabilities. And, such agencies must allocate a minimum of15 percent of their federal funding to help individuals with disabilities in transition under the measure.President Obama has expressed his support for this bill.PARENT ASSOCIATION COMMENTSheltered workshops have given meaningful work to many individuals not capable of competitive employment.This legislation could leave people with disabilities fewer options for meaningful daytime activity. This isanother issue for families and policymakers to be vigilant in watching how this legislation is implemented.AUGUST 2014PAGE 6VOR ANNUAL CONFERENCE IN WASHINGTON D.C.VOR is a national organization that supports a full continuum of care for persons with intellectual disabilitiesbased upon individual need. (www.vor.net)“Making it Happen: Reforming Policy and Law in Support of Person-Centered Quality and Choice” was thetheme of the 2014 Annual Conference.Presenters at the VOR annual conference on Sunday, June 8, 2014 included:**William Choslovsky, Esq., a partner at the Chicago law firm of Neal, Gerber & Eisenberg, LLP, gave apresentation entitled “Real choice is a two-way street, not superimposed from above: Combining commonsense, the law and grassroots advocacy.”William’s sister is a resident at Misericordia, a caring private facility in Chicago. He led the team of pro bonoattorneys that helped secure intervention and a favorable settlement in the class action lawsuit involving allprivate ICFs/DD in Illinois with more than 8 residents. Part of his message was that offering more choices forsome should not limit choice for others as is supported in the 1999 Supreme Court Olmstead decision.**Linda Colley, RN, CCDN, Secretary-Elect for the Developmental Disabilities Nursing Association (DDNA)presented information for the scheduled speaker, Kathy Brown, President of DDNA. The presentation wasentitled “The Impact of Residential Setting on Nursing Outcomes and Cost.”Kathy helped start the Northern Illinois DD Network of nurses in 1994 and has served as its president for thepast 16 years. Kathy is very interested in developing and expanding DDNA networks and increasing thenumber of nurses sitting for the certification exam. She recognizes first-hand the varied needs and abilities ofpersons with intellectually/developmentally disabilities, from those individuals capable of self-administration ofmedication to individuals requiring 24/7 nursing care.**Kim Stagliano, a nationally recognized autism advocate, presented “Is 50 Nifty with 3 Special NeedsChildren?” for VOR Annual Conference participants. Although autism typically affects boys 4 to 1 over girls,Kim has three daughters with autism. She is author of the memoir “All I Can Handle I'm Not Mother Teresa: A

Life Raising Three Daughters with Autism” and the novel “House of Cards.” Kim also serves as ManagingEditor of www.ageofautism.com/, the nation’s first daily web newspaper about the autism epidemic, and writesfor The Huffington Post and The Autism File Magazine. She has appeared on Good Morning America, ABCNews, numerous morning shows, Fox News, in The Chicago Tribune, The National Catholic Register, and onblogs around the world.In her presentation for VOR, Kim related her experiences as a mother and advocate who, like VOR members,has dedicated her life to the daily and future well-being of children with profound disabilities, in the spirit of“we’re all in this together and together we are stronger.”**The message during Congressional visits on Monday, June 9 and Tuesday, June 10 included:(1) Support mandatory national background checks for direct care workers in all Medicaid long term carehomes.(2) Reauthorize and Reform the Developmental Disabilities Assistance and Bill of Rights Act.(3) Prohibit federal agencies such as the U. S. Department of Health and Human Services and the U.S.Department of Justice from using their appropriations to disregard individual choice and limit residential choice.Congress must require that federal agencies respect choice and ensure access to person-centered, highquality supports for people with intellectual and developmental disabilities (I/DD): Some federal agencies areusing their appropriations to force a narrow vision of “inclusion” and “community integration” without regard tochoice, need and quality of care.The VOR Annual Conference offers participants the opportunity to learn from other families across the countryand from the presentations, and to continue to educate policy makers on the national level.AUGUST 2014PAGE 7GEORGIA RESULTS OF U.S. DEPARTMENT OF JUSTICE (DOJ) SETTLEMENT ARE DIREThe implementation of the DOJ settlement agreement with the state of Georgia requires the downsizing andclosure of facilities for people with intellectual and developmental disabilities and mental illness.The outcomes report of the DOJ forced closings of Georgia’s intermediate care facilities for persons withintellectual disabilities (ICFs/IID) for the year 2013 is very troubling.According to the Georgia Department of Behavioral Health & Developmental Disabilities’ "Annual QualityManagement Report," January 2013 -December 2013 there have been:1,200 hospitalizations of individuals (mental health and developmental disabilities) residing in communityresidential programs;344 individuals requiring treatment beyond first aid;318 incidents requiring law enforcement services;305 individuals who were absent from a community residential or day program;210 alleged physical abuse of an individual;82 unexpected deaths of individuals with mental illness and developmental disabilities were reviewed during2013.On March 13, the Georgia Department of Behavioral Health and Developmental Disabilities CommissionerFrank Berry announced a moratorium on transitions of individuals with intellectual and developmentaldisabilities (I/DD) from state-operated facility homes to community settings. “We are assessing the uniqueneeds of all individuals with developmental disabilities residing in our hospitals. Consequently, we have madethe decision to suspend patient transitions into community-based settings.”

TENNESEE AUDIT SHOWS COMMUNITY BASED CARE INADEQUATEThe Tennessean* February 10, 2014 (“Broken Trust” series)An audit by the state comptroller last fall, and a federal court monitor’s report tracking former residents of threeof the state’s institutions, found that troubling problems trail many of the state’s formerly institutionalizedresidents.While the state saves millions of dollars each year by serving people outside institutions, officials at privateagencies concede that a lack of adequate state funding has at times hampered their efforts to help peopleachieve the best quality of life.Identified problems include:257 reported allegations of abuse, neglect and exploitation;isolation;delays in doctor-recommended treatments in some cases and “numerous instances” of inadequate dental care;and a dramatic increase in deaths after people leave institutions (deaths among people with intellectualdisabilities transferred from institutions nearly doubled between 2009 and 2013, from 19 to 34);incarceration;and missing former residents.BHC PARENT ASSOCIATION COMMENTFederal policies of forced de-institutionalization with underfunding and ill preparedcommunity homes are having dire, sometimes deadly consequences across the nation.The supposed cost savings in “community placements” is proving to be wrong inmany instances. The only way costs will be cut for the care of persons with severeintellectual disabilities is by cutting services.AUGUST 2014PAGE 8TRIBUTE FUND FORM (please print)ENCLOSED CONTRIBUTIONIN MEMORY OFON THEOCCASION OFPLEASE SEND TO(name)(address)FROM(name)(address)MAKE CHECKS OR MONEY ORDERS PAYABLE TO “Bellefontaine Habilitation Parents Association”MAIL TO: BHC PARENTS ASSOCIATION 10695 BELLEFONTAINE ROAD ST LOUIS MO 63137THE HIDDEN TREASURE SHOP

SHOP TILL YOU DROP!! BEST THRIFT SHOP PRICES!!NOW IN BLDG #1901 FIRST BUILDING ON THE LEFT AS YOU ENTER BHC CAMPUS.WHAT TREASURE IS WAITING FOR YOU?WEDNESDAYS, 9 A.M. TO 3 P.M. AT BHCPlease leave donated items at the Parents Association shed near the Thrift Shop.PARENTS ASSOCIATION, INC. SLSSHBELLEFONTAINE HABILITATION CENTER10695 BELLEFONTAINE ROADST. LOUIS MO 63137FORWARDING AND ADDRESSCORRECTION REQUESTED

**Also, DMH will phase-down and close the state-operated Cottonwood Residential Treatment Center effective January 1, 2015. Cottonwood now provides residential services for children with mental health problems. The reduction totals 482,808. With the budget cuts there will a total reduction of 157.17 DMH state employees.