AUGUST 2011 NEWSLETT ER Families & Friends of Care Facility Residents (FF/CFR) Special points of interest: Conway HDC Wins In Court!

Victory! Chief U.S. District Judge Leon In his ruling, Judge Holmes said, disabled persons.‖ (page 81, citing Holmes issued his decision in the “Most lawsuits are brought by Olmstead, ―[DOJ] Failed to prove  HR 2032 DOJ vs. Arkansas case involving persons who believe their rights that Conway Human Develop- the Conway Human Develop- have been violated. Not this ment Center is not the most inte-  Family Members Go ment Center. The case was dis- one . . . All or nearly all of those grated setting appropriate to the To Washington, DC missed! Translation: DOJ lost! residents have parents or guardi- needs of any specific resident.‖) The DOJ’s allegation of substand- ans who have the power to assert  FF/CFR New ard (unconstitutional) care was the legal rights of their children The “oddity” of a federal agency suing itself [DOJ cases = DOJ v. Documents rejected by the Court. or wards. Those parents and guardians, so far as the record HHS (CMS); compare to, P&A  Alexander HDC Following eight years of a Depart- shows, oppose the claims of the cases = HHS (ADD) v. HHS ment of Justice investigation and (CMS)]. ______Closes . Thus, the United a federal trial which lasted 6 States [Department of Justice] is ―It is another oddity of this case weeks, parents, guardians and in the odd position of asserting that the institution at issue is friends of Conway HDC residents that certain persons’ rights have funded and regulated by one welcomed Judge Holmes’ decision been and are being violated while department of the executive of June 8, 2011, dismissing the those persons - through their branch of the federal government DOJ lawsuit. In an 85-page rul- parents and guardians disagree.‖ while another department of the Inside this issue: ing, Judge Holmes found that the executive branch contends that its DOJ failed to prove its claims that ―’Community placement’ is a conditions are so deplorable as to the Conway Human Develop- term that implies a more integrat- violate rights guaranteed to the HR 2032— 2 ment Center violated its resi- ed, less restrictive setting than institution’s residents by the Unit- New Advocacy Effort dents’ rights under the U.S. Con- does the term ―institution,‖ but it ed States Constitution. More in Congress stitution by providing substand- does not follow from the use of pointedly, the United States sim- ard care, as well as under the these terms that a resident auto- ultaneously funds Conway Devel- Arkansas Family 2 Americans with Disabilities Act matically will have a greater de- opmental Center, certifies it as (ADA) (community integration). gree of interaction in community eligible for those federal funds, Members Represent- Judge Holmes questioned the placement, i.e., with a waiver and contends that the conditions ed at VOR Confer- authority, expertise and methods provider, than in an institution there are so deplorable as to be of several expert witnesses used to such as Conway Human Develop- unconstitutional.‖ Special Thanks! 3 support DOJ’s arguments. He ment Center. The evidence estab- DOJ has 60 days from June 8, extensively cited testimony of lishes that residents of Conway 2011 to appeal the decision. FF/CFR - 3 residents’ parents and guardians Human Development Center do Read the decision at: New Documents who he noted were interact with nondisabled persons http://vor.net/get-help/legal- ―overwhelmingly satisfied‖ with - the Center is not a prison with resources. Click on “Read the Alexander HDC 3 the treatment the residents re- inmates barred from interaction full decision here” under Family ceive at Conway and ―believe that with the outside world; and con- Choice Prevails in Arkansas. the Center is the least restrictive, versely, the evidence establishes Arkansas State Gov- 3 most integrated placement appro- that placement with a waiver erning Flow-Chart for priate for their children and provider does not guarantee any Administration of wards.‖ amount of interaction with non- HDCs Subsequently, Tom York has filed a motion for reimbursement of fees and costs in the CHDC case. Regular Contact with 4 In his motion he pointed out that DOJ pursued claims that were frivolous and unfounded. The State Legislators and motion requested that attorneys’ fees and costs be repaid to the State of Arkansas in the amount of Congressmen $2,806,123 (attorneys’ fees) and $1,500,581.95 (litigation costs and expenses), totaling $4,306,704.95. Families & Friends of Care Facility Residents (FF/CFR) Page 2

H.R. 2032—New Advocacy Effort In Congress Update: Hooray!! H.R. 2032 aims to restore individual and family decision making in federally funded class action lawsuits and DOJ actions. Specifically, H.R. 2032 provides that residents of ICFs/MR, or where appointed, their Congressman legal guardians, receive notice of a federally-funded class action lawsuit involving the ICF/MR before it is and filed, and be given a time limited opportunity to opt out. H.R. 2032 also requires that DOJ consult with Congressman families as part of any action, and if a lawsuit is filed provides residents of the affected ICF/MR or where Mike Ross have appointed, their legal guardians, a right of intervention. committed to sign Ask your Congressman to sign on as a sponsor of H.R. 2032! on as “co-sponsors” Arkansas Family Members Represented at VOR Conference to H.R. 2032!! This year, Arkansas was well repre- HDC programs and asked for Congressman Tim Griffin and sented at the national VOR Con- specific actions from their offices Congressman Rick Crawford were ference and Initiative. Eight (8) to STOP funding groups which unavailable; however, we met with parents/guardians/family mem- work to eliminate congregate care their Health Liaison staff member. bers went to Washington, DC to programs. We presented booklets Subsequently, several of us met advocate for our loved ones. of information that included with Congressman Griffin in his They were: Bill & Carole charts, statistics, and letters with Little Rock office on July 1st. We Sherman, Darrell Pickney, pictures from several family mem- encourage each of you to speak Daniel & Heather Bradway, bers. with your Senators and Congress- Diane Thorne, and Alan & Jan man. Stay in contact with them Fortney. Arkansas was in the lime We shared the struggle that we all from time to time, so that when light throughout the conference went through regarding the DOJ our issues and concerns become following Judge Leon Holmes’ lawsuit against Conway, and the urgent you will already have a decision in the CHDC/DOJ case. second lawsuit filed against all of relationship established with the other HDCs. We gave them them. This year marks our organization's history, and thankfully the final first Congressional Briefing! The verdict of the lawsuit. Judge Following the VOR Conference briefing was a joint effort by mem- Holmes verdict came 2 days be- we learned that Robin Sims, the bers of FF/CFR and the Senior fore we went to Washington, and President of VOR passed away Legislative Assistant in Senator that was very timely. from a long battle with cancer. Mark Pryor’s office, Mr. Tate Robin did attend the conference Heuer. The large group (8 mem- Six members of our group had and participated. We should all Our group with Congressman follow up meetings with each of on the Capitol bers of FF/CFR and representa- be so dedicated. steps. tives from 5 of the 6 Arkansas the Congressmen the next day. Congressional offices) met in We spoke with Senator Mark We encourage each of you to Senator Pryor’s office on Monday, Pryor, Senator , attend the VOR Conference next June 13. Our group presented Congressman Mike Ross, and year, if you possibly can!! The Conway case information about the Arkansas Congressman Steve Womack.

helps demonstrate Meeting with Senators Boozman and Pryor both the value of

family/guardian

input and DOJ’s

history of excluding

their input.

Senator Mark Pryor and Tate Heuer, Health Senator John Boozman and Jack Sisson, Health Legislative Assistant, with our group. Legislative Assistant, with our group. Families & Friends of Care Facility Residents (FF/CFR) Page 3 Special Thanks

There are so many people to thank in regards to the defense of the Conway Human Development Center, Alexander and the State of Arkansas. We give a special thanks to Governor ; the Arkansas Attorney Gen- eral’s Office; the Tom York Legal team; the DDS Board; DDS Commissioner Charile Green, the CHDC Human Administrative staff; all CHDC employees/staff; and the parents and guardians that supported and partici- Development pated in the trial. Center Closes

There were hours and hours of work done by so many people in order to defend the right for our loved After 43 years of service as ones to live where they choose. an ICF/MR, Alexander Human Development Center Thanks to Judge Leon Holmes for his wisdom in his decision! The well-written document strongly supports officially closed on June 6, the role of parents and guardians in the placement decision of their loved ones with developmental disabili- 2011. Alexander HDC lost ties, affirms the appropriateness of congregate care, and also shines a light on bad public policies: one feder- its funding last ally funded program – DOJ - suing another federally funded program – Conway HDC. The importance of year, and all of the residents have been relocated to several the decision in this area of law cannot be overstated. different living arrange- ments. Some have gone to This important decision has been noticed throughout the country! Hopefully, this will help other states in other HDCs, others to group their defense against DOJ’s activities to undermine development centers such as CHDC. homes, and some are living in different communities FF/CFR - New Documents around the state. It was a sad day to see one of our centers Two new documents adopted by the Board of Directors of FF/CFR are ―Who We Are‖, and close, and we will all remem- ―Policy Statements‖. They are summarized below: ber the wonderful staff, and the good times and care that #1—WHO WE ARE states that we are members of Arkansas’ statewide parent/guardian association, Families & Friends so many individuals have of Care Facility Residents (FF/CFR). received over the years. FF/CFR is a volunteer organization, comprised of families, guardians and friends of people with mental retardation/ developmental disabilities, most of whom live in one of Arkansas’ five HDCs. We are a 501c3 non-profit corporation, and Arkansas State have no paid staff (we advocate at our own expense). We do not employ a lobbyist, and we are dedicated to securing, main- Governing taining and improving services for Arkansans with all levels of mental retardation. We advocate for a full range of services Flow-Chart for and a full continuum of living arrangements. Administration of HDCs #2—POLICY STATEMENTS addresses policies/positions we support and oppose.

Arkansas Legislature Governor FF/CFR supports open admissions for eligible individuals at all HDCs run by the Arkansas Dept. of Human Services Supreme Developmental Disabilities Services. Court

DDS Board DHS We support the choice of a range of comfortable and safe residential care options for persons with mental retardation either (Appt. by Director in their own home, in community based waiver programs, and public or private intermediate care facilities. Gov.) (John Selig)

We support vigorous opposition to litigation by U.S. Department of Justice against Arkansas’ HDCs, and opposition to all DHS alliances with entities who work to eliminate congregate care settings. Deputy Director (Janie FF/CFR supports shift differential pay for hard-to-fill shifts, in alignment with other public and private run facilities that Huddleston) require 24 hour care such as hospitals, nursing homes, etc.

DDS We support more than adequate and appropriate funding of direct care for HDC residents based on intensity of care needed Commissioner (Dr. Charlie per resident instead of level funding for all HDC residents. Green)

FF/CFR opposes the decrease in bed capacity (downsizing) at any of Arkansas’ state run HDC; privatizing HDC services Superintendents (children’s services); the reallocation of HDC program funding to other DHS programs; and the creation of “Regional Cen- Arkadelphia Booneville Conway Jonesboro SE AR HDC ters” across the State, administered by a Board of Community Providers . HDC HDC HDC HDC (Warren) (Margo (Jeff (Calvin (Forrest (Judy Green) Gonyea) Price) Steele) Adams) SPECIAL NOTE: These documents were developed due to the new DDS Systems Change Plan approved by the DDS Board at the February 2011 quarterly meeting. AUGUST 2011 NEWSLETT ER

Together We Make A Difference!

FORWARDING AND ADDRESS FF/CFR CORRECTION REQUESTED

Families &Friends of Care Facility Residents (FF/CFR) % Jan Fortney, Secretary & Editor 85 Lauren Drive Plumerville, AR 72127

Donations Sponsorships For Attendees of VOR Conference Marian Hill-Landen Steven & Anita Colbert Douglas & Diane Smart Jerry & Mary Nixon Frank & Linda Selman Loretta Alexander Memorials From - In honor of - Bill & Carole Sherman Arch Jones Bill & Carole Sherman Cornelia Taylor Douglas & Diane Smart Townes Stickmon Karen DeSalvo & Karen Mobley Ellen Mobley John & Sharon McClendon Lori

Send tax deductible donations to: Jerry March, Treasurer 1802 Berry Place Conway, AR 72032

WELCOME Newest Members to the FF/CFR Board of Directors

We have new members to our FF/CFR Board of Directors since January 2011, and they are:

Ben Finley—Arkadelphia HDC Parent Association President

Loretta Alexander—Conway HDC Parent Association President

Rita Hoover—Conway HDC

Rita Edwards—Booneville HDC

Regular contact with State Legislators and Congressmen

Policy makers are, and will continue to be, pressed to eliminate the ICF option (Rep. Greg Leding’s bill to close all HDCs by 2018 is a State example; the ADD & DOJ positions are national examples). It is critical that our families understand these realities: in order to continue the ICF programs, we must have support of State Legislators and the Governor, but most importantly, we along with families nationwide, must have more persuasive successes with Congress, DHHS agencies, and the DOJ/Civil Rights Division.

It is important that we have regular contact with each of our State Legislators and Congressmen!! Make it a point to contact them by email, phone, or letter at least every couple of months. Let them know what is going on in our state regarding the issues with developmental disabilities. Our statewide organization will send you Action Alerts, and other information in order for you to be able to contact your Legislators and Congressmen. Let’s all stay on top of the issues and make our voices heard!