Summer 2009

A Place Relationships Where Anything Is Possible

Oklahoma Department of Human Services Developmental Disabilities Services Division TA B L E O F C O N T E N T S

Summer 2009

Innerthoughts 11th Circuit Rules Thinking of Warren Doctors Don’t Trump State Our Motto on Medicaid Care for Children The name Interface was chosen for this publication 1 with Disabilities because it reflects our purpose, to create a common boundary where diverse groups interact. Interface 9 represents our effort to bring together different groups Insurance for the benefit of Oklahomans with developmental disabilities. We hope to provide information, encour­ Mandates Compassion, agement and insight. Autism Treatments Please send your ideas Fail to Pass Oklahoma Friendship and for news and features to: Legislature Sheree Powell/Writer­Editor Longevity Developmental Disabilities Services Division 8 A Good Measure of Success Community and Provider Relations 13 P.O. Box 25352 Oklahoma City, OK 73125 (405) 521­4972

Best of the Best DDSD In Direct Support Nicholson Receives Award A Dream Come True Services Honored for Contributions to College 6 3 of Allied Health Residents of a Group Home 7 in Vinita Display their Governor’s CPR Certificates Disability Employment Health and Human 9 Awards Showcase Services Rescinds Medicaid Regulations Imagining Everest INTERFACE NEWSLETTER Oklahoma’s Reason to Brag 10 4 Affecting Case James M. Nicholson ...... Division Director of Management Waiting and Hoping ...... Developmental Disabilities DDSD Employees Win 10 11 ...... Services Division Advocacy Awards Sheree Powell ...... Writer­Editor Oklahoma Documentary DDSD Fiscal Year 2010 5 Danny Phillips ...... Graphic Artist on Developmental Budget Outlook 12 Caroline Miller / Sheree Powell .. Photographer (unless otherwise noted) Quality Awards Disabilities Elves Work Year Round Best of the Best History to Air on OETA S09455 OKDHS Issued 10/09 to Make Christmas Special 6 12 This publication is authorized by the Oklahoma Commission for DDSD Clients for Human Services in accordance with state and federal State Legislative News 16 regulations and printed by the Oklahoma Department of Human Services at a cost of $5,577.00 for 9,295 copies. 14 Copies have been deposited with the Publications Clearinghouse of the Oklahoma Department of Libraries.

Oklahoma Department of Human Services Developmental Disabilities Services Division INTERFACE INNERTHOUGHTS Thinking of Warren

arren Edds, one of the first People you would never expect Wself­advocates I met after revealed underlying wounds that coming to DDSD in 1988, died on they continued to struggle with. June 22 at his home in Enid. I had That afternoon, Warren opened the not talked to Warren in a number of way for many self­advocates to years, but I used to see him honestly share and thus lighten their frequently at Oklahoma People burdens. First meetings, rallies, and other After leaving Enid State School as events. He was very active in the an adult, Warren became a well­ self­advocacy movement and was known figure in that community. not bashful about making sure his He established relationships with voice and opinion were heard. everyone he came in contact with The most memorable talk we had from mayors and city councilmen to James Nicholson was at a Governor’s Conference in several generations of workers at the Tulsa many years ago. I was scheduled to do a break­ local McDonald’s restaurant. When the city dedicated out session called “A Conversation with Jim a new bridge many years ago, Warren was invited to be Nicholson,” targeted towards self­advocates. As the the first to officially cross it in his famous three­ start time approached, I was surprised at the large wheeled cycle. number of people who were in attendance. The Warren also went on to enjoy a rewarding career topics discussed in these sessions usually centered on volunteering as a camera operator for the Enid public service delivery concerns—good and bad providers or access television station. The Enid News and Eagle staff, not being allowed enough freedom of choice, printed a wonderful article marking his passing, not being listened to, etc. “Death of Warren Edds has an impact on community.” During this session, Warren stood and began As I read it, I remembered our session in Tulsa and the talking about his life experiences and how they barriers Warren had overcome to become the person affected him. Everyone who knew Warren knew him everyone remembered as having a “cheery smile and as a very happy guy who always had a smile on his a kind heart.” Great success doesn’t come easy, and it face. But this was a different Warren. He talked certainly didn’t for Warren. about his mother leaving him as a small child at Enid You can see a video clip of Warren that appears in State School and how it pained him to think about the documentary “Living in the Freedom World” at: being unwanted and abandoned. Tears came to his http://www.mnddc.org/parallels2/one/video/video76b eyes as he struggled to come to grips with memories ­freedomworld.html. He was a star on both sides of of many decades past. He created one of those the camera. moments for which there is no real response possible other than a thoughtful, respectful silence and a touch on the shoulder. When Warren finished and sat down, other self­ advocates stood and talked about their life James M. Nicholson, Director, Developmental Disabilities Services Division experiences and the incidents that caused them pain.

Oklahoma Department of Human Services 1 Developmental Disabilities Services Division INTERFACE Death of Warren Edds has an impact on community By Robert Barron, Staff Writer, Enid News and Eagle (reprinted from June 24, 2009)

arren Edds never held a public Edds volunteered at PEGASYS, Enid’s The Enid News & Eagle Web site Woffice. He never was successful public­access television station, for 26 received a number of postings Tuesday after in business, and there are no statues of him years, regularly assisting with camera work. word of Edds’ death became known. in town. He also was known for his support for “Enid has lost a great man, a faithful But everybody knew Edds, and everyone Oklahoma State University athletics. friend and a dedicated volunteer. Warren was used to seeing him ride his three­ “He always had something positive to say will truly be missed,” said Lindy Chambers, wheeled cycle around town. about everyone,” said Wendy Quarles, executive director of Main Street Enid. His death at age 59 has had an impact in PEGASYS executive director and a friend Another stated, “Warren will be missed. Enid on people who knew him or even just of Edds. He always said hello to anyone that would knew who he was. Edds could be seen frequently around listen. OSU has lost a fan.” Edds was supposed to wear oxygen at all town riding an adult tricycle donated to People who saw him casually said it was a times since becoming ill with pneumonia in him by local business and groups, or at pleasure to know him, that he always put a May. He had not been seen for two or three McDonald’s at Maine and Van Buren smile on their face. days when his body was found by a engaging people in a spirited conversation Mayor John Criner said Edds was a good neighbor inside his apartment about 8 p.m. about OSU athletics. resident and encouraged him and the city Monday, June 22. (Enid Police Department Edds was a charter member and first commission. He went to the Public Library is investigating it as an unattended death president of the Yes We Can Civitan of Enid and Garfield County daily to and said there is nothing suspicious.) Club, which consisted largely of people remain informed on city matters. When the His funeral will be 10 a.m. Thursday at with special needs. He originated the city dedicated a new bridge on West Davis Park Christian Church with the Rev. name of the club and was nominated as Randolph in 2007, Edds was the first to Alan Seibel officiating. Burial will follow at regional director of Civitans for ride across on his bicycle. Enid State School under the direction of Oklahoma and Arkansas. He also was the Molly Helm, director of communications Brown­Cummings Funeral Home. An club’s highest point producer, earning the and marketing for Autry Technology account has been set up at Central National name “Mr. 400.” Edds scheduled regular Center, recalled being a camp counselor at Bank for funeral expenses. The funeral programs on PEGASYS, and the club Campfire Camp in high school when some home has asked friends for anecdotes to use established the “Chiller Challenge” of the clients at Sunnyside Nursing Home in his obituary. competition, in which people jump into came for the day. Warren’s nickname was Those stories may be sent to familyfirst freezing water to raise money for the Jabber as was Helm’s, and she said they @brown­cummings.com. Special Olympics program. Edds was immediately struck up a friendship. Edds was born Aug. 19, 1949, to Thomas 1981 Special Olympian of the Year. “Years later, it has been especially heart­ R. and Cheryl Holland Edds. He lived at “It’s people with special needs saying, warming to see him working the cameras Enid State School until earning his statute ‘We can do that,’” said Kathy Eck, a for PEGASYS, doing something he of independent living. He was a member of sponsor of the club. loved,” Helm said. “His cheery smile and Davis Park Christian Church since 1975. “He was an icon in this town. Even if his kind heart will be missed.” He is survived by his father, who lives in people didn’t know his name, they knew — This article has been reprinted Florida; brother Steve Smith, of Broken him because of him riding all over the with permission from the Arrow; sister Sandy Brown, of Ohio; and community on his tricycle with the orange Enid News and Eagle. aunt, Gina Crotty, of Stillwater. safety flag. They knew of him. He had an infectious smile and was always concerned about people. He was just a kind person,” Eck said.

Oklahoma Department of Human Services 2 Developmental Disabilities Services Division SUMMER 2 0 0 9 Best of the Best in Direct Support Services honored

he state’s most outstanding direct support Tprofessionals were recognized for their work during the Governor’s Conference on Developmental Disabilities March 2, 2009 at the Tulsa Renaissance Hotel and Convention Center. The annual Awards of Excellence in Direct Support Services, sponsored by the Developmental Disabilities Services Division, honors individuals working in direct care in a variety of settings. Nominations are sent to DDSD from all over the state from provider agencies, family members and individuals with disabilities. All of the direct Awards of Excellence in Direct Support Services winners: (Back Row, from support professionals recognized were presented with Awards left) Daniel Escojido, Larry Lamm, Will Watkins, David Pitts, Stephanie Lackas, Patricia Harper, Randy Brewer, Matt Weintz, and Krystal Lewis. of Excellence. Out of the award winners, the Best of the Best (Front Row, from left) Genea Shatto, April Thompson, Lucinda Flynn, Mary were chosen and featured in video presentations at the ceremony. Williams, Angel Balenti, Charity Mormon, Lora Catlett, and Steve Poland. Awards of Excellence in Direct Support Services were presented to: Will Watkins, Rescare Oklahoma Larry Lamm, Supported Community Lifestyles Lora Catlett, Gatesway Foundation Angel Balenti, Phoenix Residential Services Charity Mormon, Magna Community Living Services Stephanie Lackas, Reach Out, Inc. Randy Brewer, Gatesway Foundation Krystal Lewis, Goodwill Industries of Southwest Oklahoma Steve Poland, Oklahoma Life Skills Association Matt Weintz, Volunteers of America Nancy Newson, Kibois Community Action Foundation Patricia Harper, Garvin County Community Living Center The Best of the Best in Direct Support Services Awards were presented to: (From Left) Larry Lamm, Will Watkins, Mary Williams, Rescare Oklahoma Stephanie Lackas, Mikayla, Angel Balenti, Charity Lucinda Flynn, People, Inc. Mormon, and Lora Catlett. April Thompson, Independent Opportunities, Inc. LaDonna Lang, Central State Community Services Dneta Carr, Central State Community Services Mark your calendars! The Daniel Escojido, Supported Community Lifestyles 2010 Governor’s Conference on Developmental Disabilities Cindy Simmons, Kibois Community Action Foundation will be held March 8­9. To nominate David Pitts, Homelife Association someone for the Direct Support Beverly Kichler, Volunteers of America Services Awards, contact the Freda Kretchmar, BIOS Developmental Disabilities Services Division at Annette Bounds, Big Five Community Services (405) 521­6254. Genea Shatto, INCA Career Opportunities

Oklahoma Department of Human Services 3 Developmental Disabilities Services Division INTERFACE

Steve Scott (Right) receives a 2008 Governor’s Governor’s Disability Disability Employment Award for his outstanding work from Howard Hendrick, Cabinet Secretary of Human Services and Director of the Employment Awards Oklahoma Department of Human Services. Scott was recognized for working 19 years with the same Wal­Mart store in Sand Springs. During Showcase that time, Scott has received several promotions and pay raises.

The 2008 award Receipeints were:

BUSINESS MEDIA Oklahoma’s WINNERS: WINNER: Gene Luker Dawndee Bostwich reason to brag Aramark Glass Plant, reporter, Tulsa Duncan Banner

Gary Cook EMPLOYEE McDonald’s, Ardmore WINNERS: klahoma may be best known around the country for excellence in many Wal­Mart Bobby Bailey Cushing Othings from college football to producing award­winning country­western Bob Bennett Mike & Terry Gentry music stars. Probably not as well known is the fact that Oklahoma is the best state Tammie Burrall McDonald’s, Lawton in the nation at supporting people with developmental disabilities to work Andy Cheater Joyce and Fred Hannah in competitive jobs, according to an independent ranking by the Institute Tommy Coleman Lektron LED Lighting,

for Community Inclusion at the University of Massachusetts, Boston. Tulsa Jeff Dickson “For the past three years, Oklahoma has led the nation in assisting people with Pizza Hut Chad Joyce

developmental disabilities to find competitive jobs and become working taxpayers,” Cushing Allen Kouba said James Nicholson, Director of the OKDHS Developmental Disabilities Services Guest Inn Linda Prowell Division. “Today, more than 60 percent of individuals with developmental disabilities Ardmore Phillip Reed served by our division participate in supported employment services.” Jon Milne Peter Rowland The Governor’s Disability Employment Awards are held each October to SODEXO, Langston Steve Scott recognize individuals with disabilities for their outstanding achievements at work Wal­Mart Kenneth Smith through the supported employment program. Also recognized are businesses that Moore Judy Wolfe

hire people with disabilities and members of the media who promote supported City of Muskogee James Young employment programs. Angela Owens The Governor’s Disability Employment Awards are co­sponsored by Governor Sonic Drive­In, Ardmore Brad Henry and Lt. Governor Jari Askins, along with OKDHS­DDSD, Wal­Mart Super Center the Department of Rehabilitation Services, and the Oklahoma Association Sand Springs of Persons in Supported Employment. Wal­Mart Super Center The 2009 Governor’s Disability Employment awards will be held on Vinita Oct. 22, 1:30 p.m. at the Governor’s Mansion Pavilion in Oklahoma City.

InterFace NEWSLETTER

Oklahoma Department of Human Services 4 Developmental Disabilities Services Division S U M M E R 2 0 0 9 DDSD employees win advocacy awards

ngela King, DDSD Area II case manager, and Cindy assisted her in completing all of the legal paperwork, attended AJennings, DDSD Area III nurse, received awards court hearings with her, and then took the woman apartment from TARC in December 2008. King received the hunting. Advocate­Case Manager of the Year award, while King even helped her move into the new apartment, unpack, and Jennings was recognized with a Special Achievement in decorate. King has been known for her attention to detail and is Advocacy Award. extremely conscientious, exemplifying her commitment to those King has nearly 20 years of experience in DDSD she serves. case management, working with individuals on every Jennings has volunteered for Oklahoma People First for the last type of waiver, including the pilot project for the In­ 11 years, assisting in the establishment of new chapters, planning Home Support waiver. King began her career in the state conferences, writing grants to secure funding, and soliciting field as a direct support professional before donations for conferences. As an OPF volunteer, Jennings is becoming a recreational therapist and case passionate about teaching individuals to advocate for themselves. manager, transitioning individuals from The Her belief in their abilities empowers them to have faith in Hissom Memorial Center. King gives each themselves and in their abilities to make choices. She educates person on her caseload the individual attention OPF members on increasing their independence, vocational they need, regardless of the time it takes. As a opportunities, voting, relationships and community involvement. recent example of her advocacy and Jennings empowers OPF members by offering them a support dedication, she assisted a woman on her network to turn to when in need of assistance. By doing so, she caseload in the process of obtaining teaches others to recognize how much persons with developmental a divorce from her husband of many disabilities can do for themselves if given the right supports.

years. King referred the woman to a InterFace NEWSLETTER community resource for legal advice,

Angela King, DDSD Area II case manager, Cindy Jennings, DDSD Area III nurse, * To see Oklahoma’s is presented with the Advocate­Case Manager is presented with a Special Achievement in ranking as compared to of the Year award by John Gajda, executive Advocacy Award by John Gajda, executive other states in regard to director, TARC. director, TARC. the numbers of persons with developmental disabilities in competitive jobs (supported employment) go to, www.statedata.info. This website is a project of the Institute for Community Inclusion at UMass Boston, supported in part by the Administration on Developmental Disabilities, U.S. Department of Health and Human Services under cooperative agreement with additional support from the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education.

Oklahoma Department of Human Services 5 Developmental Disabilities Services Division INTERFACE

Quality Awards A Dream Come True Bobby Cooper and his parents were invited by Governor Brad Henry to meet with him and visit the Best of the Best capitol. Tom Cooper, Bobby’s father, is a member of the Governor’s Council for United We Ride, representing people with disabilities. Tom mentioned to Governor Henry in a letter that it had been Bobby’s dream to meet him after seeing him speak on television during his re­election. Governor Regina Chace Henry was so flattered by Bobby’s request that he Programs Manager invited the whole family for a visit to the capitol in for DDSD Employment Services November 2008. They took a few moments to pose for this photograph in the Governor’s Blue Room. From left: Tom Cooper, Bobby, Governor Henry, and Ruth Cooper.

Regina Chace, Program Manager for DDSD Employment Services, receives an OKDHS Quality Award, Best of the Best for her leadership in this program. Chace ensures there are policies and processes which support participants to have a full range of opportunities for employment. As a result, Oklahoma has been recognized as the nation’s leader in achieving impressive outcomes in integrated employment for people with

disabilities. InterFace NEWSLETTER

Oklahoma Department of Human Services 6 Developmental Disabilities Services Division SUMMER 2 0 0 9

James Nicholson, Director of the OKDHS Developmental Disabilities Services Division, is presented with a 2009 College of Allied Health Citation for Special Contributions. (Left to Right) Jeff Berry, Chair, College of Allied Health Awards and Honors Committee, College Dean Kevin Rudeen, Nicholson, and Martha Ferretti, Professor and Chair, Physical Therapy, Department of Rehabilitation Sciences, College of Allied Health. DDSD Nicholson receives award for contributions to College of Allied Health

n April 2, 2009, James Nicholson, Director of the he and members of his staff have continued that collaboration OOKDHS Developmental Disabilities Services on projects that addressed both major and minor challenges Division, was presented with the 2009 College of Allied about policy and services for Oklahomans with Health Citation for Special Contributions. developmental disabilities. Nicholson was nominated for this award by Martha “Our faculty has learned so much from this very Ferretti, Professor and Chair, Physical Therapy, Department politically astute and professional state leader. Before the of Rehabilitation Sciences, College of Allied Health, state was aware of its challenges emerging from children University of Oklahoma Health Sciences Center. In the with autism and their families, Mr. Nicholson quietly nomination for this award, Ferretti wrote: accepted the mantle of addressing what we have come “Mr. Nicholson’s background is one of diversity and richness. to know are unbelievable challenges presented by the His work ethic sets a standard for us all to follow. His calmness, impact of autism. Seven years ago, he convened a humor and general goodwill in the midst of controversy is obvious multi­agency, multi­disciplinary task force that and remarkable. And, first and foremost, his dedication to included parents of individuals with autism to improving the lives of children and adults with developmental develop the Oklahoma State Plan for Autism and disabilities has set a standard for us all to emulate. Mr. Nicholson’s the Oklahoma Autism Network. We are honored creativity, thoughtfulness, and ability to target a goal and accomplish it by him placing the OAN within the structure of regularly, in collaboration with a number of formal and informal the College. partners, prove the importance of reaching beyond one’s own resources. “Mr. Nicholson has stimulated us to mature “As a visionary in the field of developmental disabilities early in his as educators, researchers and service providers role as director, Mr. Nicholson caught the attention of both supporters to more effectively address many of and detractors. His vision was a perfect match for what our faculty were Oklahoma’s needs in the field of striving to accomplish in preparing our students and in providing services developmental disabilities.” InterFace NEWSLETTER in the field of developmental disabilities. “We approached Mr. Nicholson shortly after he became the director with a proposal for introducing assistive technology into the DDSD system differently than had been accomplished at that point. Over the past 18 years,

Oklahoma Department of Human Services 7 Developmental Disabilities Services Division I N T E R F A C E

Insurance “Sadly, this bill will do nothing to relieve the pressure on families struggling to care for children with autism,” said Sen. Jay Paul Gumm, Mandates author of ‘Nick’s Law’ legislation. “This measure was designed to for autism treatments relieve political pressure on legislators who refuse to even consider Nick’s Law.” fail once again to pass When Governor Henry signed Senate Bill 135, he said the Oklahoma legislature measure was just a small step in the effort to help affected Oklahoma families. He urged lawmakers to pass legislation to or the second consecutive year, bills that would mandate insurance coverage for the treatment of autism. Fhave mandated insurance companies to cover “There is nothing wrong with this bill, just like there is treatments for autism failed to pass through the nothing wrong with a pack of shingles at a construction site,” Republican­controlled legislature. said Sen. Gumm. “If you try to put the shingles on before you In February, the House Economic Development and pour the foundation, you are doomed to failure. As Financial Services Committee voted down House Bill Governor Henry wisely noted when he signed the bill, the 1312, also known as “Nick’s Law,” which would have foundation is insurance coverage of autism. Absent that, required insurance providers to cover autism treatment. Senate Bill 135 is doomed to failure.” The only autism­related bills that did receive enough Republican legislative leaders oppose insurance support to pass were House Bill 2027 and its companion mandates, saying they drive up the cost of health Senate Bill 135. The Senate version made it through the insurance, despite reports from states with similar legislative process and will enact a licensing process insurance mandates that show no significant increase for national board certified behavior analysts and enhance in the cost of premiums. existing state programs that would train doctors to diagnose and Republicans attempted to pass House Bill 1975, treat autism. which would only allow insurance legislation to be Critics of this bill question whether it will actually produce introduced in odd­numbered years and approved significant new services if insurance doesn’t cover the cost of in even­numbered years. The bill would have treatment and parents can’t afford to pay the bill. also required a 75 percent super­majority vote to do away with the mandate in the case of an emergency. Henry vetoed that bill and said it would have unreasonably “tied the hands of state policy makers on a very important issue.” “This would empower a small minority of legislators to thwart legitimate state efforts to address a pressing public policy issue and ensure that the restriction would rarely, if ever, be lifted,” Henry said. Nick’s Law Henry also questioned why HB 1975 restrictions were only applied to a single issue area, saying it raised legitimate concerns regarding why only one subject would be singled out for special treatment. Autism cont. on page 9

Oklahoma Department of Human Services 8 Developmental Disabilities Services Division S U M M E R 2 0 0 9 Proudly displaying their CPR (Cardio Pulmonary Resuscitation) certificates are: (From Left) Guy Bivens, Allen Larimore, Steve Sposato, Andy Edwards, Joshua Johnson, and Tino 11th Circuit Rules: Hensley, residents of the Independence House. Doctors don’t trump state on Medicaid care for children with disabilities by Alyson M. Palmer

federal appeals panel has declared that treating doctors don’t have Athe final say in how much nursing care the state must provide children with disabilities under Medicaid. On April 24, the 11th U.S. Circuit Court of Appeals reversed a district judge’s decision that had said the state must provide the amount of nursing care that a North Georgia girl’s doctor said she needs. Despite a slew of amicus briefs by state governments and Medicaid plan administrators, the panel dispatched the case in a two­page, unpublished, unsigned opinion that came out a month after oral argument. Holland & Knight partner Robert S. Highsmith Jr., who represented a pro­state friend of the court that provides managed care services for Medicaid programs, said his client, WellCare of Georgia, had been concerned about language in U.S. District Judge Thomas W. Thrash Jr.’s ruling that suggested anything Residents of the Independence House at the Home of ordered by a treating physician is medically necessary under Hope in Vinita recently became CPR certified after a fellow the law. “That one sentence just had to get reversed,” said resident had a heart attack. A staff member used CPR to Highsmith. “We are very excited that they saw and reversed save Allen Larimore’s life and he has since received a that clear error.” pacemaker. Although staff members must be CPR certified, But an advocate for the teenage girl at the center of the this event inspired Larimore’s housemates to take the class case, Atlanta Legal Aid Society General Counsel David so they could also be prepared – just in case. Donna Marlow, A. Webster, said Monday that the decision “doesn’t a CPR trainer from the OKDHS Developmental Disabilities mean much” and says little about the relationship Services Division held the class free of charge at the agency and between the state and the treating physician. “That’s

was proud that all the men passed their tests with flying colors. going to be open for future litigation,” said Webster. Webster said the case of his client, Anna C. Moore, will go back to Thrash for the judge to consider the

11th Circuit Rules cont. on page 15 Autism cont. from page 8 “Oklahoma and its citizens are better served when policy makers are allowed the freedom to address any pressing issue in the Legislature without the hindrance of arbitrary restrictions,” Henry said. Democrats offered a compromise — to put autism coverage in high­ risk insurance pools as a last resort for families who can’t afford the coverage elsewhere. Republicans again declined, and instead went forward with SB 135. This year, three more states enacted Autism Mandate legislation bringing the total to 11 states that now require insurance companies to cover treatment

for autism. InterFace NEWSLETTER

Oklahoma Department of Human Services 9 Developmental Disabilities Services Division INTERFACE Health and Human Services rescinds Medicaid regulations affecting case management

epartment of Health and Human Services (HHS) Secretary DKathleen Sebelius announed June 29 that the administration will rescind all or part of three Medicaid regulations that were previously issued and delay the enforcement of a fourth regulation. Each of these rules, in whole or in part, had been subject to Congressional moratoria set to expire on July 1, 2009. “These regulations, if left in place would have potentially adverse consequences for Medicaid beneficiaries, some of our nation’s most vulnerable people,” said Secretary Sebelius. “By rescinding Imagining these rules, we can expect that children will continue receiving services through their schools, beneficiaries will be able to Everest access all available case management resources to help them better manage their health care, and outpatient hospital and The Story of Lael clinic services can continue to be covered in the most efficient manner.” By Adrienne Benz This ruling was crucial to Oklahoma’s Developmental Disabilities Services as the state could have lost the ability “I prayed for God to open the eyes of my understanding, to bill Medicaid for 100 percent of the cost of providing and the pieces began to fall into place . . . Molly’s future had case management services to waiver service recipients, been planned since she was a young girl; she would marry and which totals approximately $22 million per year. have a bright, healthy family known for their intelligence and “The actions we are taking today are necessary to kindness. However, the birth of her first born quickly dispelled the myth of the stereotypically perfect family as Molly learns her ensure that the states have the flexibility they need to son, Lael, has Down syndrome. Struggling to accept the fully serve Medicaid­eligible individuals,” said disconcerting news and understand God’s perfect plan, Molly Secretary Sebelius. faces a challenge no more daunting than the climbing of the great Mt. Everest she often dreamed of as a child. Guilt, hope, grief and The Centers for Medicare & Medicaid happiness take Molly and Lael across rocky terrain and risky edges, Services (CMS) and HHS are: but faith and the resonant voice of God bring mother and son up the • Rescinding provisions of an interim final rule emotional mountain 30 years in the making – a mountain that revealed published Dec. 4, 2007, which would have the aptitude of Molly’s beloved son and the kindness of others. By restricted beneficiary access to case Imagining Everest, Molly and Lael forge a unique and amazing management services. These provisions relationship which allows them to overcome even the most intimidating appeared to, in practice, restrict ascension into the unknown.” beneficiary access to needed covered case management services, and limit Molly Mathew’s son, Lael, currently receives services state flexibility in determining efficient through the OKDHS/DDSD community waiver program. and effective delivery systems 264 pages ­ $14.99 (paperback) for case management services. This book is available online through Tate Publishing Regulations Expiring cont. on page 11 www.tatepublishing.com/bookstore

Oklahoma Department of Human Services 10 Developmental Disabilities Services Division SUMMER 2 0 0 9

Regulations Expiring cont. from page 10

• Rescinding a final rule, published Dec. 28, • Delaying until June 30, 2010, the enforcement of portions of 2007, that would have eliminated reimbursement a regulation that clarified limitations on health care related tax for school­based administrative costs and costs of programs so that CMS could determine whether states need transportation to and from schools. The rescission additional clarification or guidance. CMS may also further review reflects concern that the rule could limit the the potential impact of the regulation, and give additional

Medicaid administrative outreach activities of consideration to alternative approaches. InterFace NEWSLETTER schools, and that the overall budgetary impact on schools could potentially impact their ability to offer Medicaid services to students. • Rescinding a rule, published Nov. 7, 2008, that would have limited the outpatient hospital and clinic service benefit for Medicaid beneficiaries to the scope of services recognized as an outpatient hospital service under Medicare. This rule was rescinded because CMS became aware that coverage beyond that scope could not be easily moved to other benefit categories, resulting in great impact than previously anticipated.

Waiting and Hoping By Adrienne Benz

Sad is like sitting here, when I don’t have a home to run away to. So there, on the street, just waiting for something to eat, somewhere to stay and a bed to sleep on, and someone to hold. And hoping I’m still there the next day.

They have to get up from the street, in the park sitting on a cold chair, in the dark. Just waiting for someone to take them in their home. Waiting to open up and talk about their hidden feelings, like they can’t wait any longer.

Adrienne Benz was a child in state custody when she wrote this poem. She is now an adult reunited with her family.

Oklahoma Department of Human Services 11 Developmental Disabilities Services Division INTERFACE

DDSD Oklahoma documentary on developmental disabilities Fiscal Year 2010 Budget Outlook history to air on OETA OKDHS Director Howard Hendrick presented the agency’s Fiscal Year 2010 an budget to the Commission for Human Services on June 16. Hendrick emphasized that even Oklahoma with the additional federal stimulus money and other one­time funds, the agency’s overall documentary funding will be approximately $50 million short of anticipated spending levels. To achieve a documentary showing Oklahoma’s history serving people balanced budget, cuts would have to be made Awith intellectual and developmental disabilities is within each division. scheduled to begin airing on OETA (Oklahoma’s Education The Developmental Disabilities Services Division’s Television Authority) in October during national Disabilities share of the cuts amount to approximately 3 percent Awareness Month. of the division’s operating budget ($1.7 million). The video, “Wagons to Waivers: A Century of Another $200,000 had to be identified to fund the new Change” narrated by Oklahoma’s own country music initiative for Applied Behavior Analysis mandated by star Reba McEntire, will be broadcast on the OETA­ Senate Bill 135 this legislative session. Oklahoma channel starting on Oct. 24th at 5 p.m. DDSD was able to accomplish the budget cuts without and on Nov. 5th at 8:30 p.m. The program will be impact to any programs or services through reductions aired a couple times a month. at the Northern and Southern Oklahoma Resource Centers. The rest of the savings came from reductions in The documentary takes viewers on an emotional training and professional contracts the divisions holds with journey from the days of the Dust Bowl and various entities. covered wagons and shows the state’s progression Over the next year, DDSD will be under a self­imposed hiring from institutional services to full community freeze for all positions except for case management, direct care inclusion for persons with intellectual professionals and registered nurses. disabilities. Oklahoma’s story begins in 1909 If monthly state revenue collections continue to fall below with the creation of the Institute for the expected levels, additional reductions may be required of all state Feeble Minded in Enid and includes the agencies’ operating budgets. tears and efforts of parents, the stories of

Interim Studies: people who grew up in institutions, the There will be two interim legislative studies conducted this summer legal struggles, and the triumph of self­ that could impact DDSD and service recipients. advocacy. The video was produced by One of these studies will investigate a possible provider fee/tax on agencies the Oklahoma Department of Human providing waiver community services. If the provider fee/tax is found to be Services, Developmental Disabilities within federal Medicaid guidelines, it could possibly be used to fund rate increases in waiver services. Services Division.

The other legislative study will look into the pros and cons of online training OETA­OKLA is Cox Cable channel versus classroom training, specifically for providers of DDSD community 112, but other television carriers as services. well as satellite users can access Money Follows the Person: the channel, which is devoted to As of this date, DDSD has transitioned eight people from Northern Oklahoma Oklahoma­specific programming. Resource Center of Enid and Southern Oklahoma Resource Center into community Check your local television homes using the federal Money Follows the Person grant. Utilizing these federal lis tings for specific programming funds, DDSD has been able to save approximately $21,000 in the community dates and times. services provided to those individuals.

Oklahoma Department of Human Services 12 Developmental Disabilities Services Division Compassion, S U M M E R 2 0 0 9 friendship They met as boys at The Hissom Memorial Center, the now­closed and longevity institution in Sand Springs for persons with developmental disabilities. When they aged out of Hissom, the three moved about the same time A good measure to a private facility where they lived for many years. of success In 1993, The Musketeers were given the opportunity to move together once again into a house in their community supported through the DDSD Medicaid Community Waiver program. Since that time, they have he day had finally come and Danny waited lived in the house with Tanxiously on the sofa. He watched quietly as the some of the same staff nursing staff set up the hospital bed and made his members who have friend, Carl, comfortable. The minute all was clear, cared for them for more Danny went to Carl and told him how much he had than 20 years. missed him and that he needed him to get better. Carl is recovering Danny’s long­time friend had just undergone surgery from his surgery and to remove a malignant brain tumor. Danny didn’t working on his ability understand the procedure or Carl’s prognosis – all that The Three Musketeers: Danny (left) shows to speak and on his excitement over his friend Carl’s (right) mattered was that his best friend was home. return from the hospital after brain regaining the use of the It just wasn’t home without Carl. surgery. Shy Hershel (center) wipes left side of his body. tears from his eyes. Carl is considered the head of the household that he shares The staff in the home with Danny and his other friend, Hershel. Carl was always the often has to make Danny go to bed at 1 a.m. when he’s one who planned their meals, said the prayers at the dining still sitting beside Carl, encouraging him to get better room table, and got them involved in Special Olympics events. so he can go back to work. When Carl became ill and went to the hospital, it was Danny All three men have jobs and love their work – Carl who stepped up and tried to fill in – just until Carl came home. most of all. Danny somehow knows that if Carl can “The Three Musketeers” (that’s what their staff call them) have just get back to work, life will continue as they once been friends and have lived together for more than 30 years. knew it. “They’re like a well­settled family,” said Gretchen Moser, their DDSD case manager. “Even their families consider these guys a family and respect their wishes.” These days there are many opinions about Danny (left) spends hours by Carl’s side, encouraging him in his recovery. what constitutes a family or even success. But there are stories that transcend those discussions. Stories like these that remind us success can also be measured by the

love and longevity of a friend. InterFace NEWSLETTER

Relationships

Oklahoma Department of Human Services 13 Developmental Disabilities Services Division INTERFACE

HB 1461 — Sears, Ford Signed by the Governor A school that does not make adequate yearly progress for two straight years shall utilize the assistance of a school support team formed by the State Department of Education; EMERGENCY.

HB 1581 — Coody, Jolley State Signed by the Governor School teacher candidates that wish to teach elementary, early childhood Legislative education, or special education programs must study the five elements News of reading instruction; EMERGENCY. HB 1763 — Enns, Reynolds Signed by the Governor Of the thousand or more bills filed at the beginning of the Requires the state Department of Education to provide special 2009 legislative session, only a few made it through the entire education training for process hearing officers to ensure adequate process that will have an impact on persons with knowledge in special education laws and procedures; developmental disabilities, families and professionals in the EMERGENCY. field. They are: HB 1893 — Peterson, Anderson HB 1007 — Wesselhoft, Leftwich Signed by the Governor Signed by the Governor Creates the Aging and Disability Resource Consortium Requires specific Physically Disabled person signage to be to work with other agencies in developing and implementing posted as a reserved area for the parking of a vehicle displaying a single­point­of­entry concept for aging and disability a valid permit. groups in Oklahoma.

HB 1019 — Wright SB 135 — Johnson, Mike Signed by the Governor Signed by the Governor Recreates the Group Homes for Persons with Provides for the licensing of certain persons to practice Developmental or Physical Disabilities Advisory Board. as a licensed behavior analyst or a licensed assistant behavior analyst and to study children with autism HB 1048 — Banz, Aldridge and their behaviors; directs funds to be used by the Signed by the Governor Department of Human Services Developmental Relates to the collection of delinquent real property taxes; removes Disabilities Services division for training physically disabled from “incapacitated” persons granted additional time to SoonerStart providers to treat children with redeem personal items; reduces time to collect excess sale proceeds by half. autism spectrum disorders; provides for HB 1065 — Faught, Crain a behavorial analysis research pilot Signed by the Governor project; provides legislative intent. Relates to the Continuum of Care and Assisted Living Act, SB 518 — Justice, Osborn adds definition and requires inspection results to be posted Signed by the Governor on website. Adds grandparents as members HB 1424 — Protor of immediate family. Signed by the Governor SB 871 — Anderson Requires treatment facilities, transitional living facilities, Signed by the Governor halfway houses and any house or facility that may be Modifies membership of the used for medical or nonmedical detoxification to mail Electronic and Information Technology notification to property owners within a quarter mile Accessibility Advisory Council. radius if zoning changes are proposed.

Oklahoma Department of Human Services 14 Developmental Disabilities Services Division S U M M E R 2 0 0 9

11th Circuit Rules cont. from page 9 matter again. Moore, a teenager living in North The panel said both the state and Callie’s physician have roles in determining what’s Georgia who goes by “Callie,” has been receiving medically necessary to correct or ameliorate Callie’s medical conditions. in­home nursing care paid for by Medicaid for It cited a federal regulation that says a Medicaid agency “may place appropriate about a decade. The state has been trying to cut limits on a service based on such criteria as medical necessity or utilization the number of hours of care she receives each week. control procedures.” The 11th Circuit interpreted a federal law that “A private physician’s word on medical necessity is not dispositive,” the says states participating in the Medicaid program panel concluded. must provide “early and periodic screening, diagnostic Assistant Attorney General Virginia B. Fuller made the successful oral and treatment services” that are necessary to “correct or argument for the state last month. Attorney General Thurbert E. Baker’s ameliorate defects and physical and mental illnesses” in spokesman, Russ Willard, said in an e­mail that the state “is appreciative of Medicaid­eligible children. The primary ways children the Court of Appeals decision recognizing the role of the Medicaid become eligible for Medicaid are that they come from a program in providing for this treatment.” low­income family or have a disability, according to Joshua Norris, who also is director of legal advocacy for a nonprofit that H. Norris, another one of Callie’s lawyers. advocates for people with disabilities, said the 11th Circuit gave Thrash Georgia’s Department of Community Health an opportunity to say more about the roles of treating operates a program to administer Medicaid­ doctors and the state in deciding what care the state funded nursing services for several hundred needs to provide. Norris noted that Thrash wrote on children who need nursing care. It the subject last year in another nursing care case delegates the decisions about approval about a Savannah, Ga., boy who nearly drowned of such services to an organization when he was 2. called the Georgia Medical Care Thrash barred the state from enforcing a policy of Foundation. not providing nursing care for patients requiring 16 According to Thrash’s order, Callie to 24 hours per day for more than one is disabled because of a stroke she week; he said that criteria isn’t based experienced in utero and suffers from on what’s medically necessary under various chronic conditions, including federal Medicaid law. mental retardation and cerebral palsy. On the other hand,Thrash denied She lives at home and, according to the plaintiff ’s request, based on the the state’s brief, attends an elementary school in Athens, Ga., treating physician’s recommendation, for 24­ three days a week. Her lawyers have said she requires constant care. hour­a­day private nursing services for an The state’s lawyers have said that nursing hours can be reduced when the indefinite period of time. Thrash deemed such a patient’s medical condition stabilizes, positing that a goal of the program is prescription “an abuse of the Medicaid system.” to teach parents and other caregivers to take care of their children on their The state has limited discretion to deny a provider’s own. The Moores’ lawyers have contended that the state’s system of “weaning” request for care under the “early and periodic patients off their nursing services as long as they’re staying out of the hospital screening, diagnostic and treatment services” portion and not getting worse follows a different standard than that set by federal law. of the Medicaid Act, said Thrash. He added that In 2006, the state informed Callie’s mother that it was reducing Callie’s nursing “[t]he state’s discretion is limited to a review of the hours from 94 hours a week to 84, contrary to the recommendation of Callie’s request for fraud, abuse of the Medicaid system, primary care physician. Callie’s mother filed suit. and whether the service is within the reasonable The Moores’ lawyers convinced Thrash that the reduction was improper. After standards of medical care.” issuing multiple injunctions in Callie’s favor, he denied the state’s motion for InterFace NEWSLETTER summary judgment and granted the Moores’ motion in part, concluding the state must provide for the amount of skilled nursing care that Callie’s treating physician deems necessary. The panel that ruled in favor of the state in its appeal was comprised of Senior 11th Circuit Judge R. Lanier Anderson III, 11th Circuit Judge Gerald B. Tjoflat and U.S. District Judge Lisa Godbey Wood, visiting from the Southern District of Georgia.

Oklahoma Department of Human Services 15 Developmental Disabilities Services Division INTERFACE

DDSD Area II Project Elves get together to wrap all the presents and Elves work year round make sure they are delivered to the individuals before Christmas. to make Christmas special The Men in Rec also recruit fellow DDSD workers for DDSD clients to help shop for the gifts and wrap them. For the past eight years, individuals with “We could not accomplish this awesome Project Elf developmental disabilities who don’t have families or without the assistance of so many of our co­workers who would otherwise not receive gifts, have had their and our community volunteers,” he said. “It’s such a Christmas wishes come true thanks to caring DDSD pleasure to share these gifts at Christmas time and let “elves” in Area II. our customers know that they have a family through Project Elf is the brainchild of “The Men in Rec,” namely our good service to them.” Steve Pitts and Roger McDaniel, DDSD Area II recreational The Men in Rec are currently working to raise therapists, and Joe Stie, DDSD case manager. money for this year’s Christmas gifts. If you would “DDSD serves a lot of people with developmental like to join the rank of DDSD Elves by donating disabilities who don’t have families to celebrate the holidays funds or becoming a sponsor, please contact with,” said Pitts. “Although our services meet their basic Steve Pitts at [email protected] or call needs, there’s still a gap when it comes to those special things 918­794­7625. InterFace NEWSLETTER that families do for one another.” That gap has been filled by The Men in Rec who work all year Steve Pitts (right), DDSD Area II recreational therapist, gives long coordinating various events to raise money to buy Christmas a donated Wal­Mart gift card to case manager Roy Willett to purchase a Christmas gift for one of the people on presents for individuals. his caseload. “We raise all of the funds and no OKDHS money is used,” said Pitts. “This year, we are selling Blue and Gold sausage and Amish jams. We also have an annual Christmas Carol fundraising performance, which is donated to Project Elf by the American Theater Company. We are given 300 tickets that we can sell and last year we sold 225.” DDSD co­workers got together and purchased 44 of those theater tickets last year for the children who happened to be in the Laura Dester Center Shelter around the holidays. “We have also set up a sponsorship program where people can purchase the gift and return it wrapped and ready for the elf (a.k.a. case manager) to deliver. This last Christmas we had 108 sponsors, 30 of whom were the case managers themselves.”

Oklahomaklahoma Department of Human Services 16 Developmental Disabilities Services Division Developmental Disabilities Services Area Offices and Resource Centers

CIMARRON TEXAS BEAVER HARPER WOODS ALFALFA GRANT KAY OSAGE NOATTA CRAIG OTTAWA Area I Area II HINGTON HINGTON ROGERS

ELLIS WOODWARD GARFIELD NOBLE WAS MAYES Enid

MAJOR DELAWARE PAWNEE PAYNE TULSA DEWEY BLAINE KINGFISHER LOGAN CREEK WAGONER ADAIR Tulsa

LINCOLN OKMULGEE CHEROKEE ROGER MILLS CUSTER MUSKOGEE CANADIAN OKLAHOMA SEQUOYAH OKFUSKEE OklahomaOklahoma City City McINTOSH IE BECKHAM WASHITA CADDO CLEVELAND GRADY TOM HUGHES HASKELL AWA

GREER PITTSBURG LATIMER LE FLORE

KIOWA SEMINOLE Area III POTT McCLAIN

COMANCHE GARVIN PONTOTOC

HARMON Pauls Valley JACKSON STEPHENS COAL

TILLMAN MURRAY PUSHMATAHA McCURTAIN COTTON

CARTER JOHNSTON ATOKA JEFFERSON MARSH BRYAN CHOCTAW LOVE

Greer Center (Enid) 2501 N.E. Delaware ...... 580 ­­237 1027/2599 Enid, OK 73701 ...... FAX 580 ­­213 2799 Northwest Oklahoma Resource Center at Enid (NORCE) 2600 E. Willow ...... 580 ­­237 1027 www.okdhs.org Enid, OK 73701 ...... FAX 580 ­­548 2600 Southern Oklahoma Resource Center State Office at Pauls Valley (SORC) 3210 Chickasaw St...... 405 ­­238 6401 toll free 1­866­521­3571 Pauls Valley, OK 73075­ 6822 ...... FAX 405 ­­238 8261 DDSD Area I Office (Enid) AREA I 729 Overland Trail ...... 580 ­­548 8900 Enid, OK 73703 ...... FAX 580 ­­548 8964 toll free 1­800­522­1064 DDSD Area I Office (Oklahoma City) 4545 N. Lincoln Blvd...... 405 ­­522 6925 AREA II Oklahoma City, OK 73105 ...... FAX 405 ­­522 6995 toll free 1­800­522­1075 DDSD Area II Office (Tulsa) Laura Dester Center, 1427 E. 8th ...... 918 ­­560 4848 AREA III Tulsa, OK 74120 ...... FAX 918 ­­560 4898 toll free 1­800­522­1086 DDSD Area III Office (Pauls Valley) 301 S. Indian Meridian Rd...... 405 ­­238 4700 Pauls Valley, OK 73075...... FAX 405 ­­238 4740 IfIf you would likelike toto findfind out what thethe Developmental Disabilities Services Division has to offer, come and visit our Web site at: www.okdhs.org

This will take you to the main Oklahoma Department of Human Services Web page. From there, just click on Divisions and Offices, and the Developmental Disabilities Services Division. On our Web site you will find information about services the division offers, how to apply for services, eligibility, policies, contract provider agencies and much more.

Come visit us today. You may be surprised at what you will learn.

OKLAHOMA DEPARTMENT OF HUMAN SERVICES Developmental Disabilities Services Division P.O. Box 25352 Oklahoma City, OK 73125