State Disability News Highlights

By Diane McComb posted 11-12-2015 03:53 PM


State Disability News Highlights for Period ending 11/13/2015


This week had an unusually high number of newsworthy articles.  There were excellent disability exposes in several states (FL, MN, TX, VT) and numerous articles regarding state funding issues.  Kansas continues its downward spiral sadly, and Illinois and Pennsylvania still don’t have approved state budgets 5 months into the year causing serious issues for human service nonprofits in both states.


Lead Story:  Minnesota -  Five Part Series – A Matter of Dignity

Part 1:  Dead-end jobs, low pay (See parts 2-5 below)

In a field on the outskirts of town, a man with Down syndrome is spending another day picking up garbage. He wears faded pants, heavy gloves, a bright yellow vest and a name tag that says “Scott Rhude.” His job is futile. Prairie winds blow debris from a landfill nearby faster than he and his co-workers can collect it. In the gray sky overhead, a turkey vulture circles in wide loops. Rhude, 33, earns $2 an hour. He longs for more rewarding work — maybe at Best Buy, he says, or a library. But that would require personalized training, a job counselor and other services that aren’t available. “He is stuck, stuck, stuck,” said his mother, Mary Rhude. “Every day that he works at the landfill is a day that he goes backward.” Rhude is one of thousands of Minnesotans with disabilities who are employed by facilities known as sheltered workshops. To read more -



During a Tuesday meeting at the Capitol, lawmakers continued pouring over the state's Medicaid system. A task force of elected officials is nearing an end-of-the-year deadline to make recommendations for reforms to the program providing healthcare to low income and disabled Arkansans. One being considered is contracting with a managed care company. A report from consultants hired to assess the system noted that "Arkansas is one of a small number of states" not using managed care, which, it said, is "beneficial in lowering Medicaid costs, while often seeing quality improvement." "Managed care is definitely in the loop," said State Rep. Kim Hammer, R-Benton.  "I think it has to stay on the table." But the idea is being met with resistance from lawmakers with doctors in their families. One of them is State Sen. Missy Irvin, R-Mountain View whose husband is a physician.  Asked whether potential profit losses to her husband's practice influence her opposition, Irvin said "we already have so many structures in place to limit those." Irvin says she worries managed care companies would save money by cutting reimbursements to doctors who then could not afford to treat Medicaid patients. "It shouldn't matter what you look like or how rich you are or how poor you are," she said.  "You should still be able to have access to good, quality physicians." According to the consultant's report, Texas and Pennsylvania realized billions of dollars in savings over a handful of years by implementing managed care in their states. But opponents say patients have been forced to drive more than an hour to see doctors under managed care in some cases.



Colorado voters will decide next year whether this state should be the first to pay for comprehensive health care for residents. Proponents of a single-payer state system gathered enough signatures to put ColoradoCare on the ballot, the secretary of state's office announced Monday. They needed 98,492 valid signatures to put a state-governed health care system to a vote. After reviewing a 5 percent sample of the 158,831 signatures submitted, the secretary of state projected that the valid total would be 110 percent of the number required — and certified that Initiative 20, the "State Health Care System," will be on the 2016 ballot. Residents would choose their own health care providers, but ColoradoCare would pay the bills. The measure is likely to ignite a fiery debate because of the costs involved. Backers estimate ColoradoCare would raise $25 billion a year for health-care costs through a proposed 10 percent payroll tax. Critics decry it as a massive expansion of government that would double the size of the state budget. To read more -



Connecticut's largest union representing health care workers is optimistic a new, tentative agreement to pay certified nursing assistants at 20 nursing homes $15 an hour will become standard throughout the state and nation. The tentative agreement announced Tuesday evening would cover 2,600 workers at Connecticut nursing homes owned by iCare and Genesis. It still needs to be ratified by workers over the next couple weeks, but it ends the potential threat of a strike at these homes. The union is still negotiating on behalf of workers at seven Paradigm Healthcare facilities. "We're hoping the momentum continues into other homes and into other professions, even home care workers and child care and people who are really struggling with these low wages," Jennifer Schneider, communications director for SEIU 1199, New England, said Wednesday. Labor, state legislators and nursing home operators in Connecticut have agreed that nursing home workers should receive higher pay. The new state budget included an additional $26 million, partly state and federal funds, that the Department of Social Services will distribute to homes to help reimburse wage increases for eligible direct and indirect care workers. An additional $9.6 million has also been authorized for increases to certain employee benefits, according to DSS. Matthew V. Barrett, executive vice president of the Connecticut Association of Health Care Facilities, praised the concept of using federal Medicaid dollars to finance part of the cost of boosting nursing home workers' wages as smart fiscal policy. Connecticut is eligible for a 50 percent federal reimbursement for Medicaid expenses. Barrett pointed out how nursing home residents benefit from efforts that can reduce staff turnover, such as significant wage increases. Many of the nursing assistants currently earn $10, $11 or $12 an hour, according to the union. To read more -



For the past 10 months, Adriana Parrales has been confined to her bed, breathing through a ventilator and fighting her insurance company for her life. Her days are spent with nurses monitoring vital signs that can be stable one minute and swing out of control the next, because of a genetic condition that causes debilitating tumors on Parrales’ brain and spine. After she was placed on a ventilator that has breathed for her since she was “trached” last December, her insurer — Florida’s Medicaid program — tried to deny her the round-the-clock nursing care she needed to stay out of the hospital and in her home. In August, Parrales — who suffers from a genetic disorder that afflicts 100,000 Americans — joined a class-action lawsuit with four other Floridians, challenging the state’s oversight of community-based and in-home care for thousands of frail elders and adults with serious disabilities. The suit alleges that a lack of clear standards is to blame for the repeated denials of care that Parrales and other patients have to fight on a daily basis.  “They just shuffle you in circles just waiting for you to go back to the hospital or hoping you die,” said Adriana’s mother, Rita Parrales. The program that serves Parrales and the others was designed to divert elders and adults with disabilities away from costly nursing homes and institutions and allow them to live at home or at least in a community setting. Nursing care and other services are paid for by Medicaid, the joint state and federal insurer for the most needy, under a “waiver” of federal rules that grant the state greater flexibility in spending. Florida has several such waivers that, in theory, allow the state to avoid more costly institutionalization. “Plaintiffs can point to no authority that obligates states to draft their rules and contracts in a way that is understandable to layperson Medicaid recipients. The Agency for Health Care Administration would not discuss the lawsuit until a version of this story already had been published. Instead, administrators pointed to a motion to dismiss the suit that said no beneficiaries of the Medicaid long-term care program have been harmed by the problems and that no one has been forced to seek care in a nursing home because community services fell short. Although the agency says in its response the plans are not confusing, even if they were, “Plaintiffs can point to no authority that obligates states to draft their rules and contracts in a way that is understandable to layperson Medicaid recipients.”  On Friday, AHCA Secretary Liz Dudek offered this statement: “The Agency takes very seriously the level of care all Florida Medicaid recipients receive. We have strengthened our contracts, giving the Agency the authority to ensure that our plans are providing the highest quality of care. We strive as an Agency to keep patients in their homes and communities and we have designed our program with multiple incentives to ensure just that. AHCA will continue to fight to ensure that all 89,000 recipients in the Long-term Care program have access to and receive high quality of care.” AHCA, one of three state agencies that oversee health for Floridians, administers the Medicaid program, which serves about 3.8 million in the state.  Under federal law, patients enrolled in the Medicaid program may choose to live in a nursing home or other institution, and they generally cannot be required to wait indefinitely for a bed to become available. Choosing to live at home, or in another community setting, is another matter. States can set limits on the level of care or services patients receive in the community, and they also can require patients to wait — sometimes for years — for a slot to open. As a consequence, most of the state’s community care programs have wait lists — some quite long. The Long-Term Care program that serves Parrales, for example, has a wait list with 32,000 names. Another program, which serves Floridians with developmental disabilities — such as mental disabilities, cerebral palsy, autism and Down syndrome — has a wait list that tops 20,000 people. The list was eliminated in the late 1990s after a Fort Lauderdale federal judge threatened to have the federal government take over the state’s long-troubled disability program. But lawmakers allowed the list to climb again as they chose to limit dollars to the program. In 2011, lawmakers ordered that the community-based care program for elders and disabled adults, the Long-Term Care community program, transition into a managed-care model, along with virtually all of the state’s Medicaid efforts. Statewide, seven insurers participate: United Healthcare, Sunshine Health, Molina, Amerigroup, American Eldercare, Coventry, and Humana. Without minimum requirements for care, the services that frail and disabled adults receive vary wildly across the state, said the suit, filed by Disability Rights Florida, a federally funded watchdog group; Southern Legal Counsel; and Gainesville lawyer Nancy Wright.  To read more -



Gov. Bruce Rauner used an amendatory veto Friday to rewrite legislation aimed at blocking his cuts to home care for the elderly and disabled, saying Illinois cannot afford to provide the services without more sweeping changes in the way the state does business. The move sends the bill back to lawmakers, who can vote to go along with his changes, reject them or do nothing and let the measure die. The action comes as lawmakers prepare to return to Springfield to vote on another Democratic proposal that would roll back the Republican governor's cuts to a child care assistance program that helps low-income families. "These bills may be well-intentioned, but they are ultimately harmful to the programs they are trying to help," Rauner spokesman Lance Trover said in a statement. "The governor understands and shares the frustration of members who want to fund these programs, but the appropriate way to do so is in the context of a truly balanced budget." The state has been operating without a complete budget since July 1, after Rauner vetoed the majority of the unbalanced spending plan Democrats sent him. The sides remain deadlocked as the governor seeks to tie the budget-making process to winning his agenda that would limit union rights and benefit business owners. As the governor tries to trim state spending in the meantime, he proposed cutting the number of people who qualify for services such as adult day care, personal assistants, homemakers, meal delivery and in-home therapy. To determine whether someone is eligible for services, and to what level, an assessment is used to arrive at what's known as the Determination of Need score. That score is calculated using a variety of factors, including how much help is needed with day-to-day tasks like eating, grooming, travel, housework and preparing meals. The higher the score, the greater the need. The current minimal threshold is a score of 29, which Rauner wants to raise to 37 — a prospect advocates say would leave 10,000 people with disabilities and 24,000 seniors without help. The bill Rauner vetoed was aimed at blocking his administration from raising the score. In rewriting the bill, the governor kept the score at 29. In effect, that means he won't be able to raise the score down the road without approval from lawmakers. But in return, his rewrite contains what could be a poison pill among Democrats: a provision that would force patients to choose between receiving care in a community setting or an institution, instead of allowing them to take advantage of both. The governor argues that the move would save money by limiting access to more expensive institutional care. But advocates say the change could prove problematic for some seniors, and lawmakers said they would have to consider changes before deciding whether to attempt to override the governor. "I think that we have to be very careful that seniors and very frail people are not put at risk," said Rep. Greg Harris, D-Chicago, who sponsored the legislation. "It looks like they are trying to set up different classifications for seniors and different classifications for people with disabilities." To read more -



A senior federal official expressed “significant concerns” Friday that Iowa’s plans to shift its Medicaid health insurance program to private management could put the quality of health care for 560,000 low-income and older Iowans at risk. Questions are also being raised about the extent to which so-called managed care organizations, health care providers and people receiving Medicaid services are prepared for the transition, which is scheduled to begin Jan. 1, said Timothy Hill, deputy director of the Centers for Medicare and Medicaid Services, a unit of the U.S. Department of Health and Human Services. To determine whether the Iowa Department of Human Services is ready, federal officials plan to visit Iowa for four days of on-site interviews and will review the state’s documentation, Hill said. He also said federal officials will hold several “listening sessions” in November to better understand operational issues most affected by the changes. Hill’s letter to the Iowa Department of Human Services arrived as a controversy has swirled about Republican Gov. Terry Branstad’s plans to shift it’s $4.2 billion Medicaid program from a state-run system to a privately managed system. Both the state and federal governments share in the Medicaid costs. A series of stories published as part of a Des Moines Register investigation has explored questions about nepotismunfair bidding practices, fraud convictions and hundreds of millions of dollars in past fines or settlements involving the four companies selected to manage Iowa’s Medicaid program.



Massive disruptions Tuesday to a public conference call about Iowa’s plan to privatize its Medicaid program has caused the federal government to postpone another one that was scheduled for Thursday. The two-hour calls are designed to give Iowans a chance to voice concerns about the program's planned privatization to the Centers for Medicare and Medicaid Services, better known as CMS. The CMS must grant approval to Iowa before Gov. Terry Branstad and his administration can shift management of the $4.2 billion annual program to four for-profit companies. Branstad insists the plan would save at least $51 million in the first six months of implementation, although his administration has been unable to show how they made such a calculation. Critics contend the savings – if any – will come at the expense of diminished services to Iowa’s 560,000 elderly and poor residents on the program. The state's Medicaid privatization effort has been the subject of multiple challenges, including allegations that the Branstad administration engaged in unethical and possibly illegal competitive bid practices. The Iowa Hospital Association has also filed a lawsuit, challenging the change as illegal. The CMS on Tuesday launched the first of four “listening sessions” where more than 500 people jammed the lines and, at times, spoke over each other in an attempt to ask questions. By late Tuesday the CMS announced it was delaying the next planned session on Thursday because of “technical issues.” The date of the rescheduled Thursday session has not been announced.  It also remains unclear if the two sessions scheduled for next week will go on as planned. Here is information about each of the remaining sessions. Each is directed to a specific target group but is open to the general public:  Non-institutional medical providers NOTE: This session has been postponed. A makeup date had not been announced as of Wednesday, Nov. 11 November 12th 1:30 pm to 3:00 pm CST Institutional medical providers November 13th 1:30 pm to 3:00 pm CST 1-877-267-1577 PIN: 994 414 009 Other Medical providers November 16th 1:30 pm to 3:00 pm CST 1-877-267-1577 PIN: 992 112 202



Kansas revenues for the rest of the fiscal year were revised downward $159 million Friday, a hit so stunning that Gov. Sam Brownback’s budget director immediately outlined budget adjustments. The adjustments total $124 million and include a $48 million transfer from the Transportation Department, said Budget Director Shawn Sullivan.  The moves will allow the state to keep paying its bills. Asked if the state was in the red, Sullivan replied: “Depends on what you look at. We’re basically at zero right now, so yes.” Raney Gilliland, legislative research director, said the more pessimistic revenue outlook was due to downturns in the farm economy and the oil and gas industry and continued disappointing sales tax numbers. Gov. Sam Brownback’s tax policies are causing the sun to sink on Kansas’ future  And the bad news on the revenue front will continue, officials said. The revenue estimate for fiscal year 2017 was cut by $194 million. The new fiscal forecast updates one issued in April and revised in July. The forecasts are made by university economists, legislative researchers and officials in Brownback’s administration. Sullivan said the adjustments for this fiscal year, which will include $14 million in cuts that require legislative approval in January, would result in an ending budget balance in June 2016 of just $5.6 million. “We’ve drained” the state’s coffers, said House Minority Leader Tom Burroughs, a Democrat from Kansas City, Kan. “Drained by this administration to shore up their failed tax policies.” Democrats and some moderate Republicans point to income tax cuts championed by the Brownback administration as the reason for the budget crisis. Faced with shortfalls earlier this year, the Legislature approved increases in sales and cigarette taxes. “After the Legislature passed the largest tax increase in history, you think we’d have some stability in the budget,” said Senate Minority Leader Anthony Hensley, a Topeka Democrat. “There’s no question we have to go back into the 2012 and 2013 income tax cuts if we’re going to have any stability in the budget.” To read more -



A budget deal in Washington, D.C., is helping Kansas balance its own books temporarily with an infusion of Medicaid cash. But a Democratic senator says the savings should be used to provide home and community-based services to Kansans with disabilities. Gov. Sam Brownback’s budget director, Shawn Sullivan, answered lawmaker questions Monday about the administration’s plan to shift about $125 million to the state general fund. The transfers are needed because state revenue estimators revised tax receipt projections down for the fourth straight time last week, leaving Kansas with a projected deficit for the fiscal year that ends June 30. Almost half of the $125 million comes from the state highway fund, but about $25 million of it comes from Medicaid. Sullivan said some of that money is available because the D.C. budget deal reduced projected Medicare premiums for low-income residents who get their premiums paid through Medicaid. Sullivan said the rest of the Medicaid savings comes from revised actuarial cost estimates that will not affect any recipients or providers within KanCare, the state’s managed care Medicaid system that serves more than 425,000 Kansans. “It does not involve any service reductions or provider rate reductions or changes,” Sullivan said. “It is, this part, a change in the estimates.” While facing a tight budget in the last year, the state has used increased federal money from the Children’s Health Insurance Program and a prescription drug rebate program to fill gaps. Sen. Laura Kelly, a Topeka Democrat, asked Sullivan if the $25 million could be used to fund services for Kansans with disabilities on waiting lists for Medicaid programs that provide services to help them remain in their homes rather than institutions. Sullivan said they could, but the state’s budget picture compels the administration to go a different route. “Just like anything, when you have savings, you can either choose to use that for state general fund or reappropriate to something else,” he said. “Yes, we could do that, but in our case we’re helping with the state general fund shortfall.” Sullivan said fully funding the current waiting lists would cost more than $100 million.



Kentucky’s Republican governor-elect, Matt Bevin, won this week promising to scrap the state’s Kynect insurance exchange created under President’s Barack Obama’s health-care overhaul while repealing and replacing its Medicaid expansion. Yet Kynect, which Bevin has called part of a “financially ill-advised program,” in two years has enrolled 521,000 people in Medicaid or federally subsidized private plans. Joining is as easy as going to Mall St. Matthews for people such as Wilson, an 18-year-old nursing student who makes $300 a month, and it doesn’t cost tax dollars to run. Bevin’s rise to power will test the ability of Republican politicians to take away what in Kentucky is a popular program that has helped one in 10 residents to get insurance. All of the Republican presidential candidates have promised to repeal or replace the Affordable Care Act, also known as Obamacare. The House has voted more than 50 times to scrap or restrict the program despite the certainty of the president’s vote. In order to make those gestures reality, the new governor will have to confront residents like Wilson. To read more -


Minnesota – Part 2: Alone and at Risk

Each year, hundreds of Minnesotans with developmental disabilities and mental illnesses are uprooted from their families and sent to live in secluded group homes in remote parts of the state. Cut off from the communities they know, housed with strangers, they often fall deeper into anger and despair. Many, like Ashley, see violence and self-injury as their only means of escape. Minnesota’s far-flung network of group homes is another sign of how it has fallen behind other states in the movement to integrate people with disabilities into mainstream life. Though designed as safe havens for people too vulnerable to care for themselves, group homes now leave thousands of adults isolated and vulnerable to neglect and abuse. A Star Tribune review of hundreds of public documents has found - Minnesota relies more than any other state on group homes to house adults with disabilities, spending $1 billion annually for about 19,000 people in more than 4,500 facilities.  While many group homes are safe and orderly, others are understaffed and chaotic. To read more -'s-group-homes/330695801/    


Minnesota – Part 3: Epic wait for unspent aid

Thousands of Minnesota families are being forced to wait months — even years — when they seek state financial assistance that helps people with disabilities build more independent lives. Minnesota’s waiting list for this form of aid, relative to its population, is now among the largest in the nation. And yet tens of millions of dollars intended for these families is going unspent in Minnesota every year, records show. Carrie Peterson-Edberg, whose 12-year-old son Garrett has severe autism, recalls shouting with joy when a county social worker called to say he qualified for aid to cover behavioral therapy and personal caregiving at home. That was seven years ago. They are still waiting. Jeff and Ellen Pearson moved to Minnesota from Indiana in the hope of obtaining a better life for their daughter, Abby, who has been cognitively impaired since birth. Abby was immediately placed on the waiting list. That was 14 years ago. They are still waiting. Families say the long waits needlessly isolate people with disabilities from mainstream work and more fulfilling lives. Adults who could be living in their own apartments or working in middle-class jobs are instead stuck in their parents’ basements, awaiting approval they may never get. The chronic delays do not occur because Minnesota is a stingy state. It consistently ranks among the top states nationally on a key measure of disability spending. For those who do receive the coveted assistance, known as a Medicaid “waiver,” Minnesota’s package of benefits is the most generous in the nation. And, state officials point out, most families on the waiting list still receive other subsidized services, such as personal care aides and county case managers.,-waiting-list-grows/330696571/


Minnesota – Part 4: Inclusion Pays Off (See Article under Vermont) -


Minnesota – Part 5: Intimacy Denied

With late-summer mosquitoes buzzing around them, the two giggled and caressed each other, their voices muffled by the rush of a nearby stream and the traffic above. “It’s our secret hideaway,” said Rachel, 21, who has Down syndrome, as she snuggled with Nicholas, 24, who has a developmental disability. “Here, no one can see us and we are free to do whatever we want.” For people with disabilities like Rachel and Nicholas, such freedom to be intimate is rare. Across Minnesota, disabled adults complain of having to overcome constant hurdles to engage in romantic activity and sustain loving relationships. The obstacles include arbitrary curfews, lack of transportation, and segregated housing that cuts them off from mainstream social life and opportunities to date. Often, the barriers are imposed by group home operators that place safety above intimacy. In the isolating confines of Minnesota’s more than 4,500 group homes, true intimacy can be impossible. To go on a date, adult residents generally have to obtain permission in advance, then go out under the watchful eyes of paid staff. More ambitious requests — such as spending the night in bed with a partner — can trigger a long sequence of meetings and consultations. The physical and legal barriers are sometimes reinforced by the widely held perception that people with disabilities are “asexual,” or are too helpless to consent to intimacy, advocates say. To read more -'s-disabled-adults,-freedom-to-be-intimate-is-rare/330697391/



Montana officials say about 5,500 people have signed up for Medicaid in the first week of expanded eligibility to the working poor. Department of Health and Human Services Director Richard Opper announced the results of the initial wave of enrollments during a cabinet meeting Tuesday. An estimated 70,000 people are eligible now that Medicaid has been expanded to people who earn up to 138 percent of the federal poverty level — $33,000 for a family of four. Coverage begins Jan. 1 but enrollment goes on year-round. Federal officials approved Montana's plan on Nov. 1, making the state the 30th to expand Medicaid under President Barack Obama's health-reform law. The Montana plan requires beneficiaries to pay premiums and co-payments.


New York

On November 5, 2015, the Centers for Medicare & Medicaid Services (CMS) announced that CMS is partnering with the New York State Department of Health (NYSDOH) and the Office for People with Developmental Disabilities (OPWDD) to test a new model for providing Medicare-Medicaid enrollees with a more coordinated, person-centered care experience. “We are pleased to partner again with the State of New York to bring more person-centered care to Medicare-Medicaid enrollees,” said CMS Tim Engelhardt, Director, CMS Medicare-Medicaid Coordination Office.  “We look forward to working together to provide Medicare-Medicaid enrollees with intellectual and developmental disabilities an opportunity to experience more integrated benefits and coordinated care.”   This partnership will create a program demonstration known as Fully Integrated Duals Advantage for Individuals with Intellectual and Developmental Disabilities (FIDA-IDD) to better serve individuals with intellectual and developmental disabilities who are eligible for both Medicare and Medicaid and will focus on these individuals’ long-term care needs.  The FIDA-IDD Demonstration will offer more opportunities for individuals to direct their own services, be involved in care planning, and live as independently in the community as possible. New York State and CMS is working with Partners Health Plan to offer this FIDA-IDD program in New York City, Long Island, and Rockland and Westchester Counties.   Voluntary enrollment in the program will begin no sooner than April 1, 2016.  This demonstration for individuals with intellectual and developmental disabilities shares the general goals and structure of the Fully Integrated Duals Advantage (FIDA) Demonstration, which is already operating in New York, but the two demonstrations involve different populations and Medicare-Medicaid Plans. Other important distinctions between the two demonstrations are that the FIDA-IDD Demonstration does not allow for passive enrollment of eligible individuals and includes a benefit package tailored to support individuals with intellectual and developmental disabilities. Improving the care experience for low-income seniors and people with disabilities who are Medicare-Medicaid enrollees – sometimes referred to as “dual eligibles” – is a priority for CMS.  Currently, Medicare-Medicaid enrollees navigate multiple sets of rules, benefits, insurance cards, and providers (e.g., Medicare Parts A and B, Part D, and Medicaid).  Many Medicare-Medicaid enrollees suffer from multiple or severe chronic conditions and could benefit from better care coordination and management of health care and long-term services and supports.  Through the demonstrations approved under the Financial Alignment Initiative, CMS seeks to provide Medicare-Medicaid enrollees with a better care experience by offering a person-centered, integrated care initiative that provides a more easily navigable and seamless path to all covered Medicare and Medicaid services. To read the MOU - To read more -


After decreasing last year, the waiting list for a state program that provides services to Oklahomans with developmental and intellectual disabilities has grown again, to the highest level ever. As of Oct. 15, the wait time for those seeking state-paid services for their developmental disabilities was nearly a decade, according to the Oklahoma Department of Human Services. The number of people on the waiting list grew from 6,992 in July 2014 to 7,239 in October this year. The list could grow longer as increasing numbers of people apply for services and the state looks at more cuts in funding because of an expected budget shortfall next year. “When we got on the waiting list, they said it would be several years, so I knew going into it,” said Broken Arrow resident Olivia Morgan, whose son Josiah Melton, 9, has been on the waiting list since April 2008. Josiah is non-verbal and has chromosomal disorders. “Hopefully, we're getting close, because we're seven years in.” Oklahoma uses state and federal Medicaid funds to pay for various services for the developmentally and intellectually disabled in provider-run community homes or their family's home. Those needing services have conditions such as autism, cerebral palsy, Down Syndrome, brain injuries and intellectual disabilities. About half are children. Services can be long-term case management, home health aides, personal or medical care, therapy, vocational training and retrofitting of homes and vehicles. There have been some efforts during the past decade to lower the wait time. The biggest occurred when the state Legislature appropriated a total of $3 million over the last three fiscal years to address the issue. To read more -



Legislative leaders and the governor’s office said Monday that they have tentatively agreed to a framework for an end to the impasse that has delayed the Pennsylvania state budget more than four months. Leaders from both parties in the House and Senate briefed their members on the proposals under discussion, which Republican leaders said include increases in education funding, a hike in the sales tax and a large increase in relief from local property taxes. It was clear that disagreement remains. While a spokesman for Gov. Tom Wolf, a Democrat, insisted that Republicans had committed to particular increases in the main K-12 education funding line and funding for special education and pre-K over the next two years, aides to the top Senate Republicans said that was not entirely the case. “We’re moving, which is obviously a huge step forward for all of us,” said Senate Majority Leader Jake Corman, R-Centre. “I think we can resolve these other issues in a fairly short period of time, but until they’re resolved, I can’t tell you we’re done because we’re not.” … “The whole conversation is still fluid,” he said. Bill Patton, spokesman for House Democrats, said work remains to be done. “We’re encouraged by the progress that’s been made so far, but we don’t have an agreement yet,” he said. To read more -   



TennCare is seeking public comment on its Revised Statewide Transition Plan. This is the plan to make sure the State is complying with the new federal rule on Home- and Community-Based Services (HCBS) settings and is being submitted in December to CMS (Centers for Medicare and Medicaid Services). Tennessee shared the State’s proposed transition plan in January 2015. CMS requested more information from TN, so the plan has been updated and revised, and is now open for public comment through Dec. 4, 2015.   To read the plan -



It’s 9 a.m. on one of the coldest days of the year, and 33-year-old Betty Calderon is brushing her long black hair in anticipation of seeing her fiancé. For the last two weeks, Ernest Rodriguez has been locked up at the Travis County jail for aggravated assault by strangulation. He is accused of choking Calderon until she almost blacked out. That night in November 2014, the couple was getting ready to bed down in a parking lot in one of the few pockets of East Austin that hasn’t been gentrified. Calderon was scrolling through the prepaid cell phone she’d purchased for Rodriguez with her disability income when she discovered intimate messages he’d exchanged with another woman. She confronted him. Tempers flared. It wasn’t the first time Rodriguez had choked her. This time, though, the cops showed up before she passed out. “He was pushing my wind really hard, and I had weak breathness,” Calderon says a few weeks after the incident, the bruises on her neck finally fading. “But I still have feelings for him. I pray for him every day and tell him goodnight every time I go to sleep.” Calderon has been homeless for more than two years. She receives Social Security disability income, but because of an intellectual disability, she has trouble managing money. People steal from her and sometimes she splurges on things like Air Jordans and can’t afford to buy food at the end of the month. Calderon has Type 2 diabetes, which is tough to manage when food is something you find rather than buy. Her dental hygiene has deteriorated to the point that decay has eaten a hole in her front two teeth. With Rodriguez in jail, Calderon says she struggles. He protected her — when he wasn’t hurting her — and helped her find food and places to camp. They would take turns at night guarding their spot while the other slept. Calderon’s situation highlights an overlooked demographic: those who are homeless and have intellectual disabilities, generally defined as having an IQ below 70 and lacking the social, conceptual and practical skills needed to manage everyday life. With regard to the well-being of citizens with intellectual disabilities, Texas ranks 50th among the states and the District of Columbia, according to the nonprofit United Cerebral Palsy. Only Mississippi is worse. Research on the intersection of homelessness and limited cognition is sparse but the best estimate is that about 9 percent of homeless adults have an intellectual disability, compared to 1 to 3 percent in the general population. As many as 73,000 Texans with intellectual disabilities are on a waiting list to receive home- and community-based services, such as employment assistance, behavioral counseling, dental care and placement in small group homes with around-the-clock caregivers. (In contrast, at least 17 other states have waitlists with fewer than 1,000 people.) For someone signing up today, the wait to receive services could be as long as 14 years. Some people caught in limbo have families who can house and support them in the interim. Others, including Betty Calderon, make do the best they can. There is no official estimate of how many people on the list are homeless. But experts say that Texas’ failure to fully fund services forces some people with cognitive impairments onto the streets, where survival requires quick wits. Dennis Borel, executive director of the Coalition of Texans with Disabilities, says that underfunding social services and housing support means that taxpayers spend more when people end up in jails and hospitals. “This is a huge problem for the state of Texas,” Borel says. Meanwhile, Betty Calderon is used to waiting. She’s been waiting her whole life, it sometimes seems, for someone to help her. To read more -



In the basement kitchen of a stone church nestled in the Green Mountains, Rachel Wollum studied her reflection in an oven window, adjusting her auburn hair and orange polka-dot dress until they were just right. Satisfied with her appearance, Wollum, who is 26 and has Down syndrome, carefully poured four trays of freshly baked chocolate chip cookies into bags bearing her name. Then, with the intensity of a drama student, she rehearsed lines familiar to almost every store clerk in Middlebury, where “Rachel’s Cookies” are now a household name. “Hi, my name is Rachel, any cookies today?” she said. “Great, thank you so much for serving my cookies. Have a beautiful day! You’re welcome!” With her zest and ambition, Wollum personifies the remarkable strategy that has made Vermont a leader in the civil rights movement for adults with disabilities. If she lived in Minnesota, Wollum might have been steered into a sheltered workshop or mobile cleaning crew, where thousands of disabled adults perform mundane tasks and have little or no contact with the broader community. But here, in this state of hardscrabble hillside farms and country roads lined with sugar maples, sheltered workshops are a thing of the past. Disabled adults are expected to take their place each day alongside other working people. In the 16 years since the U.S. Supreme Court ordered states to end the segregation of people with disabilities, few states have carried the flag as boldly as Vermont.  “The days of hiding people away in closeted boxes where you could no longer see them or think about them — those days are over here,” said Pauline O’Brien, 80, whose cognitively impaired son, Sean, worked at a sheltered workshop for 23 years. “And we’re never going back.” In 2002, Vermont became the first state to stop funding sheltered workshops. The state also ended the practice, still common in other states, of using Medicaid to subsidize group homes for people with disabilities. Instead, the state sends money directly to disabled clients for services of their choosing, such as job coaching and transportation. Today, Vermont leads the nation in almost every measure of workplace inclusion. Vermonters with intellectual disabilities are twice as likely to find jobs in the community as their counterparts in other states. Nearly 40 percent work in the community alongside people without disabilities, compared with 13 percent in Minnesota. “In Vermont, they imagined a system focused on the empowerment of individuals, rather than institutions, and they achieved it,” said John Butterworth, director of the Institute for Community Inclusion at the University of Massachusetts, a research center on developmental disabilities. “They proved it can be done.” To read more -