We are advocating for the following:
The State Board needs to pass Seclusion and Restraint regulations that:
Also, the regulations must ensure that KSDE will be able to investigate these standards and requirements per the authority identified above:
1) Definition of ESI/Imminent Risk of Harm,
2) Prompt parent notification when ESIs are used on their child, and
3) Ensure staff are trained on ESIs before they are used.
This issue will NOT go away. Unless the Board passes EFFECTIVE and ENFORCEABLE regulations, than either Board members or Legislators will have to deal with this issue year after year. Doing the above steps WILL address this issue ONCE AND FOR ALL. The time to act is now!
URL for the State Board Contact info
http://www.ksde.org/Default.aspx?tabid=60
Email Addresses and phone numbers for the 10 Board members
Johnson County:
Sue Storm sstorm717@aol.com
(913) 642-3121(h)
John Bacon jwmsbacon@aol.com
(913) 660-0392 (h)
Wyandotte County
Janet Waugh JWaugh1052@aol.com
287-5165 (h); (913) 620-5062 (c)
Manhattan Area
Kathy Martin martinkathy@yahoo.com
(785) 463-5463 (h)
Hutchinson Area
Ken Willard kwillard48@gmail.com
(620) 669-0498 (home)
Wichita Area:
Walt Chappell chappellhq@chappell4ksboe.com
(316) 838-7900(w)
David Dennis dtdennis@swbell.net
(316) 729-1979 (h)
(316) 650-0152 (c)
Topeka Area:
Carolyn Campbell campbell4kansasboe@verizon.net
(785) 266-3798 (h)
Independence & SE Kansas:
Jana Shaver jshaver@cableone.net
(620) 331-1452 (home & fax)
Liberal & SW Kansas:
Sally Cauble SCauble@swko.net
(620) 624-6677 (h)
The governor wants to move the residents into community-based facilities in July, as part of his efforts to reduce the state's budget deficit. A House committee approved the plan on Tuesday, but it still must pass the full House and Senate.
Officials with Stormont-Vail Regional Health Center on Thursday told the editorial board of The Topeka Capital-Journal that KNI is the best place to provide the specialized care the patients need. If the institute closes, acute care hospitals would face "astronomical" costs to care for the patients, they said.
At KNI, 98 percent of the patients have severe or profound mental disabilities, 83 percent can't speak, 76 percent have a seizure disorder, 68 percent can't walk and 33 percent receive nutrition through tubes. The median age is 47, with 94 percent having lived at KNI for more than 10 years, the Capital-Journal reported.
The hospital isn't equipped to provide highly specialized services that are required by KNI patients, said Maynard Oliverius, president and chief executive officer of Stormont-Vail Regional HealthCare. He said the amount of care needed for a KNI patient could strain the hospital's ability to care for other patients.
In 2010, Stormont-Vail had 67 admissions from KNI, with a Medicaid reimbursement of $1.02 million. The hospital absorbed $500,000 in losses that Medicaid didn't cover.
If the institute closes, "there simply isn't adequate care" for the patients in community-based facilities, Oliverius said. "We just do not believe there is anyone in the state to adequately take care of this population" other than KNI.
But Rocky Nichols, executive director of the Disability Rights Center of Kansas, said closing KNI would be best for the residents, if money used to treat them follows them into the community and cost savings are applied to the 3,500 people statewide who are on a waiting list for developmental disability care.
Nichols, whose group advocates for the legal and civil rights of the disabled, said it costs about $177,000 per year to treat each patient at KNI, and moving them to community-based care would reduce that cost to about $100,000 per patient. Those leaving KNI would receive needed services because federal law ensures funding follows patients from an institution into the community, he said. Residents of KNI would move ahead of the other 3,500 people on the waiting list for development disability services.
"They will have to be served in the community," Nichols said. "They will be served, and they will be served well." Nichols said the closing 13 years ago of the Winfield State Hospital, which moved residents to community-based homes, proved that the state is able to care for disabled people. He said independent studies have shown former Winfield patients have an improved quality of life.
"The position we would like to take is, what happens after KNI closes?" Nichols said. "We understand people are opposed to KNI closing. We get that. But the question is, what happens next?
"Everyone needs to be on board with money following people into the community."
___
Information from: The Topeka Capital-Journal, http://www.cjonline.com
Copyright 2011 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
]]>
Lawrence woman, returned to her job at a local business.
Several days later — and for the first time in her life — Stacey was fired.
She was given several reasons for the firing, but she thinks the real reason was the weeks she was away from work
and at the treatment facility.
“I absolutely believe it was,” said Stacey, who asked that her real name not be used. Her case is being investigated
by the Kansas Human Rights Commission. In her circle of friends, she’s heard other stories of people with mental
illnesses being fired under similar circumstances.
Though mental illness is now protected against discrimination by the federal Americans with Disabilities Act, such
cases are commonly reported in Kansas.
Of the roughly 1,000 discrimination complaints the Kansas Human Rights Commission handled in 2009, more than
300 were based on some form of disability status — including mental illness, said Ruth Glover, the agency’s
associate director.
Glover’s agency has a range of options if officials believe discrimination has occurred, sometimes including legal
action.
But even then, discrimination based on mental illness can be difficult to prove, said Randy Puckett, executive director
of the Lawrence-based Recovery and Hope Network.
“It’s hard to prove what someone was motivated by,” said Puckett, who for years says he’s faced discrimination
because of his mental illness.
And those with a mental illness are caught in a “Catch-22,” Puckett said, as employees must decide whether or not to
disclose a mental illness to an employer.
Those who do disclose can receive accommodations from an employer, but then they risk discrimination because an
employer is now aware of an illness not previously known to them. If they don’t disclose, it’s difficult to receive
accommodations.
“It’s pretty hard to know ahead of time” how an employer will react, he said.
A big part of the problem is a misunderstanding about mental illness, said Rocky Nichols, executive director of the
Disability Rights Center of Kansas. His agency works to inform the public and employers about disabilities, including
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mental illness.
Nichols said mental illness isn’t given the priority of physical illnesses, which can be seen and understood easily by
employers.
It isn’t so clear when the ailment is a mental illness, Nichols said, but the treatment by an employer shouldn’t be any
different.
“Just like you need so many days to recover from a physical issue,” he said.
Fighting public opinion
Aside from stigma and discrimination in the workplace, Stacey said people with mental illness also face negative
public opinion — particularly by people who feel those with disabilities abuse public assistance programs such as
Social Security.
“It’s frustrating,” she said, adding that she strives not to rely on public assistance — and not to give in to the
challenges of her mental illness.
“I don’t consider myself disabled enough not to work,” said Stacey, who is in college and hopes to work in the social
services field when she graduates.
Not working, she said, “would be a tremendously boring life.”
]]>-------
Kansans with mental illnesses have been voting without state constitutional protections for decades. It was no big deal. Until about two years ago, when Rocky Nichols, director of the state's disability rights center, was working on a case involving the voting rights of a client with an intellectual disability. "And I said, well, let me check the constitution. So I went to the suffrage provision and read it, and found out that there's no prohibition for a person with an intellectual disability, but there is a potential prohibition for a person with a mental illness," says Nichols. "And it just hit me like a ton of bricks. I was just shocked." Section two, article five of the Kansas constitution states 'the legislature may, by law, exclude persons from voting because of mental illness, or commitment to a jail or penal institution.' Nichols says what ensued after sharing what he learned with others in the mental health community was a groundswell of support to try and eliminate the prohibition. The campaign's been largely funded by the health care foundation of Kansas City, which underwrites health reporting at KCUR.
Kansas is not the only place that includes such language about mental illness in its books. And a century ago, referring to people as idiots or insane within areas of voting restrictions and other legal issues was the norm. In fact, the Kansas legislature removed that language from article five in the mid seventies, but then replaced it with the term mental illness. Still Lewis Bossing, a senior attorney at the Bazelon Center for Mental Health Law, says in recent years, many states and the federal government have been moving away from statutes that exclude general groups of people - like those with disabilities - from voting. "As a country, we're moving toward a recognition in our voting laws that people with mental illness should have the same right to vote that everyone else does," says Bossing. "It's a crucial distinction to note that for the most part, people with mental illness at most times are capable to make a choice. And for state governments to take away that right based a categorical blanket kind of concern about the impropriety of voting or some voter irregularity is simply a form of discrimination. There are a lot of people without mental illness who come into the voting process without a lot of information or perhaps without having given it a lot of thought. I don't think there's a reason to classify people with mental illness as having harder times making the choice than anyone else does."
To date, Kansas has not actually acted on its authority to prohibit people with mental illnesses from voting. Bossing says with the passage of legislation like the Americans with Disabilities Act, courts would likely overrule any attempt to do so. That happened several years ago in
Maine, after voters twice rejected a measure to amend similar language in their state's constitution. Local advocates say they still view the language as a potential threat here, and concerns over public perceptions of the issue have many out this campaign season.
-------
Cherie Bledsoe faces a crowd of about seventy five at an Amendment Two rally in Overland Park. She says she's struggled with mental illness but, has gotten help and since recovered. She now directs a consumer organization and says it's crucial for the state to clean up the threatening language of the constitution. "It stigmatizes those of us with mental illness. It furthers the discrimination, the disrespect, fear and misunderstanding that surrounds mental illness," says Bledsoe. "It gives a false impression of our capabilities and makes assumptions that paint a negative picture of people with mental illness."
Mark Wiebe, the rally's M.C., and director of public affairs at Wyandot Center, tells the crowd the issue is one that directly and indirectly affects just about everyone. "Mental illness can strike anyone at anytime," says Wiebe. "Consider this: one in five Kansans can be expected to have a mental health disorder in a given year. That comes to more than half a million Kansans. It includes people with post traumatic stress disorder and many other disorders. Think about that last illness, PTSD. It can affect anyone who experiences a traumatic incident, but it's most often associated with victims of sexual assault and soldiers returning from combat."
Weibe says the constitution's language is of another era, when people didn't know what they do today about mental health. He sees the change as part of a larger shift in the way society views and cares for people with mental illness. Whether or not others see it that way, has yet to be determined...at least until next Tuesday, when Kansans take to the voting booth.
]]>The Association of Mental Health Centers of Kansas [2] held a noon-time rally at the KU Edwards Campus on Friday about their “Yes on 2; initiative.
The group wants to remove words from the Kansas Constitution [3] that could enable the legislature to disqualify those with “mental illness” from voting.
Mark Wiebe, Director of Public Affairs at Wyandot Center for Community Behavioral Healthcare [4], said ”we need to blow the cobwebs off the Constitution and remove this threat that exists to the voting rights of every law-abiding Kansan.” According to Wiebe, “one in five Kansans can be expected to have a mental disorder some time in a given year.”
Wiebe introduced three Kansans who described there experiences with mental illness and their experiences with voting:
Richard Thompson, a UMKC student, said “recovering from these issues has not been easy … but this has never kept me from being an active citizen or being involved in politics.”
Cherie Bledsoe, a mother, grandmother, and mental health advocate, said she “struggled between living and dying” with her mental illness but “I got help” and that “mental illness does not define all that I am.” Bledsoe said “I know so many good, hard-working, tax-paying citizens who live with mental illness and take an active interest in their communities.”
According to Bledsoe “the language in the Constitutional provision carries the potential to restrict our voting rights. This potential is harmful.”
Tomas Hernandez, a veteran and mental health advocate, described growing up in a traumatic home and living with mental illness for about 25 years. Hernandez said such disabilities doesn’t affect one’s ability to vote.
Rocky Nichols, Executive Director of Disability Rights of Kansas [5], said Amendment 2 was the culmination of three years of work on the issue.
Nichols said there is no known organized opposition to Amendment 2. “Nothing organized, but the biggest challenge we have is battling the stigma” of mental illness according to Nichols.
Later in an informal discussion, Thompson said medical advances have helped with the understanding of mental illnesses and improved the ability of those to function who are affected. “Based on research, too, people can recover”, added Hernandez.
Bledsoe said “we’re the evidence that people can and do recover.”
Nichols speculated that the biases in the 1970s inadvertently replaced a narrow term like “insane” in the law with a broader term “mental illness.” “In all honesty they were potentially taking away the right to vote for more Kansans” when the law waschanged in 1974. “It was wrong back in 1974 when it was passed, and it’s wrong today,” according to Nichols.
Text of Proposed Constitutional Amendment 2 on November ballot: Question No. 2:
Explanatory statement. This amendment would repeal the authority of the legislature to exclude persons with mental illness from voting.
A vote for this amendment would ensure that the right to vote for persons with mental illness cannot be taken away by the legislature.
A vote against this amendment would continue the current authority of the legislature to take away the right to vote forpersons with mental illness.
Shall the following be adopted?
§ 2. Disqualification to vote. The legislature may, by law, exclude persons from voting because of mental illness or
commitment to a jail or penal institution. No person convicted of a felony under the laws of any state or of the United
States, unless pardoned or restored to his civil rights, shall be qualified to vote.
]]>
Juliet Banks wants the same things most mothers want for their children. She wants to see her son reach his potential and achieve at least some of his dreams, including working and moving away from home. But 21-year old Brandon is somewhere in a 4,000-person deep line waiting for services offered to people with developmental disabilities.
Banks, who attended his final days at Highland Park High School last month, is among a growing number of Kansans who at 21 have aged out of the public school system to find nothing waiting on the other end. It is a difficult reality for those with disabilities who can find themselves going from the classroom to the couch, and it is a logistical challenge for families that must make difficult decisions about how to care for children that can't be left home alone. They are decisions that can lead some families to leave jobs, sending them into a financial tailspin.
"It is one of the, I think, dirty little secrets out there," said Rocky Nichols, executive director of the Disability Rights Center of Kansas. "These families who have fought so hard to get special education and related services for their children and fought so hard with Medicaid to get the services and support they need when they are under 21 now get sucker-punched and not only run up against a brick wall, they run into a brick wall, bounce off of it and then find themselves standing in a line called a waiting list that is 4,000 deep."
For a time, Banks helped other families with disabled children navigate the system. In those years, the waiting list was manageable. Still, years in advance, she put her son's name down, requesting that services begin when he turned 18. But when funding didn't keep up with demand, Brandon stayed in school until he was 21 — the age at which students with special needs age out of public schools. He is still waiting.
"My husband and I will probably have to cut back on work during the day," Juliet Banks said. Services vary depending on the need of the recipient. They could include around-the-clock care, assistance to live independently with roommates or support for working in a job. Some families are able to pick up the tab for the care — at least for a short time, said Ramona Macek, community developmental disabilities organization director at TARC. Some families face crisis, particularly one-income, single-parent homes. When they are available and able, grandparents can be invaluable, she said.
The Banks are among the families that can count themselves lucky to have two wage earners. "There are families that have it a lot worse than I do," Juliet Banks said. Some help is coming, but advocates say it won't be enough. The Legislature restored a 10 percent cut in Medicaid funding that affected both the pay for workers in the field and the quantity of services provided. Lawmakers also added $6.9 million that will be shared to address the waiting list for the physically and developmentally disabled. Tom Laing, executive director of InterHab called the new money a "drop in the bucket" that might take 150 names off the waiting list. Lawmakers, Laing said, have years of underfunding to address. Although he said it feels like lawmakers turned a corner this year toward addressing funding, "a hell of a lot of people were ignored."
"It's terribly shortsighted," he said. "The responsibility has been passed on from legislative session to legislative session until the current Legislature was faced with a multiyear challenge. It will take us three or four years at a minimum to whittle down the waiting list until it's manageable again."
In the meantime, many of those children will stay in school longer. Anecdotally, school districts like Shawnee Heights Unified School District 450 say they are seeing greater numbers of children with developmental disabilities stick around until age 21 rather than leave at 18 because they are on the waiting list.
Of Shawnee County residents waiting for services, 81 are between the ages of 18 and 21, Macek said. Some, she said, have waited five years for services. It is a waste, Laing said, to invest in intensive education services while children make their way through public schools and then leave them with nothing on the other end to help them maximize their abilities. "When you deny them the one path that exists for them to do that you've not only stolen from their lives but you've thrown your money into the fire, so to speak," he said. The options are limited.
Tonia Martin's oldest son Justin White recently finished up at Washburn Rural High School. While Justin is 21, Tonia Martin can't leave him unsupervised. Cooking would be dangerous. He likely wouldn't make a good choice if a stranger came to the door. As is, Justin receives 15 hours of support services during which he works one day and volunteers another. Martin believes her son is near the top of the waiting list but is planning to spend time at home with Justin in coming months. A recent graduate in social work from Washburn University, she is going to take some time off before returning to school to work on her master's degree. Until he finds his way off the waiting list, she worries he will lose out on the future he had envisioned, including living away from home.
"Everything we planned for and hoped for, now that his time has come, we're uncertain of what is going to happen," she said. "It's not fair to them. They deserve the same opportunities that we have."
]]>Against the backdrop of the Brown v. Board of Education National Historic Site, speakers encouraged participants in a rally Saturday to mobilize their relatives and friends in support of the city's endangered human relations department.
"We may be preaching to the choir, but it's up to you to go out and get additional choir members," said Glenda Overstreet, vice president of the Kansas NAACP. Overstreet was among 12 people who spoke at a nearly two-hour rally held in support of the city's human relations commission and department. Bill Beachy, chairman of the Topeka HRC, said 189 people attended the event held on the lawn just east of the Brown v. Board site, 1515 S.E. Monroe. Sixteen groups sponsored the rally, which was held in response to city manager Norton Bonaparte's announcement May 17 that as a cost-cutting measure, he would ask the city council to abolish the human relations department and terminate the jobs of its three employees.
Bonaparte proposes the city still maintain its nineperson, volunteer HRC, which would continue to offer such services as public forums, education and outreach opportunities. A date hasn't been set for the council to consider Bonaparte's proposal. Ensuring fair and equal rights for all Topekans in the areas of housing, employment and public accommodation is the mission of the HRC and human relations department, the latter of which employs a director, an office assistant and a civil rights investigator. Bonaparte suggests the city close the department and direct residents with discrimination concerns to the Kansas Human Rights Commission. But Beachy told Saturday's audience that for Topekans, asking the state HRC to resolve their problems regarding discrimination would be like calling the Kansas Highway Patrol to deal with a prowler in their backyard.
"You want a cop on your beat who knows your block," he said. Other speakers said the state HRC has a considerable backlog of cases and saw its staffing reduced this year by two investigators. Lorene Williams, vice chairwoman of Topeka's HRC, urged the audience to fight any effort to diminish city human relations functions. Topeka's HRC has been in existence since 1961, she said. "In the words of the Rev. Martin Luther King, our lives begin to end the day we become silent about the things that matter," Williams said. "These are the things that matter." Troy Scroggins, a member of the executive committee for the Topeka NAACP and a former member of the Topeka HRC, stressed that Topeka has been an inspiration to other communities as a key player in the fight for human rights. Scroggins also said Topeka's HRC and human relations department still have much to do. "Topeka is not a utopia as far as human relations is concerned," he said. "But it's a lot better place than it would have been if not for the efforts of the human relations commission."
The only speaker at the rally who didn't speak out against Bonaparte's proposal was Karen Hiller, the one city council member on hand. Hiller told those present that she "came to listen" and hadn't expected to be called to the podium. Hiller, who is retired executive director of Housing & Credit Counseling Inc., said she provided fair housing counseling her entire career and considers it essential for the city to continue to offer a "human relations element."
Hiller stressed that council members have yet to see the specific proposal Bonaparte will ask them to approve, adding that she still has a lot of questions. Organizers of the rally handed out fliers containing the phone numbers and e-mail addresses of the nine council members. John Nave, a former councilman, urged those on hand to "bombard" the council with messages in support of the human relations department. Nave described the proposed closing of that department as being "flat-out wrong."
]]>TOPEKA, Kan. (AP) — New proposals to raise taxes on Kansas businesses have surfaced, but a Senate committee wrestling with the state's budget problems doesn't appear likely to consider imposing a special tax on soda and sugary drinks.
Members of the Ways and Means Committee already were mulling proposals to raise sales, tobacco, liquor and even individual income taxes for wealthy families. A few senators floated a plan to impose a penny-per-teaspoon tax on the sugar in soda and other packaged drinks, but the main sponsor doubted it would get a serious look.
The list of options ahead of the committee's meeting Friday included proposals to reverse some tax breaks granted to businesses in previous years. The changes would increase their taxes by $52 million for the fiscal year beginning July 1.
The committee has drafted a $13.6 billion budget for the next fiscal year, but the spending would outstrip anticipated revenues by about $500 million. The Republican-controlled panel wants to avoid trimming aid to public schools and social services, something Democratic Gov. Mark Parkinson also opposes.
Committee members expect a tax plan to emerge from Friday's discussions. Legislators are under pressure from educators and groups providing social services to raise taxes.
"The majority of Kansans would rather see legislators do the right thing," said Rocky Nichols, the Disability Rights Center of Kansas' executive director. "They like tax increases more than they like cuts to education and social services, particularly lifesaving services for seniors and Kansans with disabilities."
The proposed soda tax has the backing of public health advocates, but beverage bottlers and distributors have lobbied heavily against it. The measure would increase the cost of a 12-ounce can of regular soda by 10 cents.
Sen. John Vratil, a Leawood Republican who is the idea's main sponsor, said senators probably won't include it in a tax package this year. "I think it's because it's new and legislators are not comfortable with that approach at this time," he said.
Some GOP senators such as Vratil agree with Parkinson that further spending cuts aren't responsible, but many Republican legislators worry that increasing taxes will hurt working families and slow any economic recovery.
And Kent Eckles, a lobbyist for the Kansas Chamber of Commerce, questioned the fairness of increasing the tax burden on businesses when many have been struggling. The proposed changes would hit manufacturing companies and firms that bought equipment before 2006.
"That's just piling on business folks," he said. "That's just shortsighted and doesn't make any sense."
The House Appropriations Committee has endorsed a budget that wouldn't increase taxes. It cuts aid to schools by $86 million, but conservative GOP leaders believe schools can offset that by raising local property taxes or by tapping reserve funds. The plan also assumes the state will receive new federal money.
House committee Chairman Kevin Yoder, an Overland Park Republican, said Parkinson and others are providing "a false choice" between tax increases or severe budget cuts.
Yoder said that if legislators rein in spending this year, agencies will be pushed into finding efficiencies and won't be required to make drastic cuts in services.
"Everyone knows there's waste in government," Yoder said. "Do Kansans truly believe government is running as efficiently as it can?"
]]>Prospects of implementing a new method of financing services for people with developmental
disabilities diminished Monday when skepticism was expressed about obtaining federal
authorization for a special state fee on home and community-based care providers.
Members of the Senate's budget committee learned the mechanism being considered to secure
additional Medicaid funding for disabled Kansans likely wouldn't pass federal review by the
Centers for Medicare and Medicaid Services. The idea was to collect a fee from service providers
and leverage the cash to qualify for extra Medicaid payments, which would be funneled to people
receiving treatment from the home and community-based providers.
"Based upon our research and exploration of issues related to provider assessment, we would
anticipate it would be difficult to get CMS' approval," said Ray Dalton, deputy secretary of the
Kansas Department of Social and Rehabilitation Services.
The stumbling block for Senate Bill 562 emerged during a hearing of the Senate Ways and Means
Committee.
Under the bill, home and community-based service providers with more than 10 clients would
contribute to the state fund 3 percent of gross revenues tied to providing treatment of
developmentally disabled people. It is unclear how much the fee would generate or how much
federal aid might have been available.
Rep. Bob Bethell, R-Alden, said the surprise assessment of the Centers for Medicare and Medicaid
Services' sentiment about the provider tax meant Kansans were less likely to get services they
deserve.
"That is the entire interest. We have individuals who need services," Bethell told the Senate
committee.
There is a waiting list of people who are eligible for services but can't receive assistance due to the
state's ongoing budget problems.
Several organizations representing people with disabilities urged adoption of the Senate legislation
in anticipation federal officials might soften opposition.
"There is an excellent chance that further CMS interpretations may enable us to go forward," said
Tom Laing, executive director of Interhab, an association of organizations serving the disabled.
"We believe you and we owe it to persons we serve and those who wait for service to find
additional resources."
Mike Oxford, executive director of the Topeka Independent Living Resource Center, said the
state's budget deficit, projected to be greater than $400 million in the fiscal year starting July 1,
made it imperative Kansas officials weigh all options for financing services to disabled persons.
"Given that the economy is expected to remain weak for some time, it makes sense to try to
explore new sources of funding," Oxford said.
Nick Wood, representing the Disability Rights Center of Kansas, said the bill's language should be
broadened to provide additional resources to children with mental health problems.
"We would challenge the committee to examine the reasons for, and if any, the reasons against
including the children," he said.
Medicaid cuts affecting local families
The "Big Tent Coalition" is calling on Kansas legislators to restore medicaid cuts
“Any more cuts, and I may have to go into a nursing home,” said Terry
Walter of Topeka. Walter has diabetes, congestive heart disease and uses
a wheelchair.
Daniel Perez of Wichita talks about care services his son, Daniel, 18, who is autistic, is losing
under recent Medicaid budget cuts. The Big Tent Coalition called for restoration of the 10
percent budget cut. At a news conference Friday in the Capitol, several people said the lost
services will result in more people being placed in more expensive nursing home care.
Because of dwindling tax losses, Gov. Mark Parkinson cut Medicaid by 10
percent or $77 million. The cut has been especially harmful because it
means the loss of an additional $140 million in federal matching funds.
“It’s just mind-boggling that we would cut those services only to force
people into institutions which are going to cost taxpayers more dollars,”
said Rocky Nichols, executive director of the Disability Rights Center of
Kansas.
He said policymakers don’t understand that the cuts “are real and are
devastating people’s lives, and without restoring those cuts, it’s only going
to get worse.”
At a news conference, several people caring for those with disabilities
spoke about the need to restore funding.
Margaret Landry, a caregiver from Lawrence, said that because of the
cuts, the 3-year-old boy she takes care of, Max, will be unable to get a
new wheelchair when he grows out of the one he is in now.
Daniel Perez of Wichita said the cuts have forced him to lose respite and
dental care for his autistic son, Daniel, 18.
And Kathy Payne of Berryton said the cuts have reduced the wages for
the caregiver of her 36-year-old daughter, Robin, who is severely disabled.
Without Robin’s caregiver, Payne said she would not be able to hold down
a job and keep her daughter at home.
State money troubles are on a collision course with some of the state's
most vulnerable residents.
Friday, a disability rights group called on Kansas legislators to restore a 10
percent cut to medicaid.
Medicaid cuts affecting local families
The "Big Tent Coalition" is calling on Kansas legislators to restore medicaid cuts.
For Shannon Graham and her 4 disabled children, getting out the door in
the morning is no easy task.
She says nothing happens fast around their house, "We wait for Max's
nurse to get here and then she'll get him ready, we'll get him off to school
and then we all will head of to the doctor's offce with Carley."
They're already feeling the legislature's 10 percent cut to medicaid effect
them directly, "Personally its my kids wheel chairs right now, Max who is
three has outgrown his wheelchair and we took it in to the D-M-E who has
always provided his chairs, and a week later we got a call saying were no
longer taking Kansas Medicaid."
Friday morning, a disabilities group named the "Big Tent Coalition" called
on the state to restore those very cuts that are affecting the Grahams and
hundreds more.
Rocky Nichols is the Executive Director for the Disability Rights Center of
Kansas, "Our message is simple, you can pay this now or pay a heck of a
lot later. If you don't fund community based services, people will end up in
institutions which are entitlements under medicaid. Its going to cost
taxpayers 6 times the amount that it would to provide those services in
the community."
Nichols went on to say, policy makers are essentially handing down a tax
increase to those who can't help themselves. Unfortunately, he expects
things will likely get worse for the disabled before they get better.
Gov. Mark Parkinson is on the cusp of determining the fate of Kansas Neurological Center in Topeka.
A commission concluded in October the facility serving 160 profoundly disabled adults should be closed and residents transferred to Parsons State Hospital or smaller community living units.
A bipartisan contingent of the Shawnee County legislative delegation opposes KNI's closure, while advocates for placing people with disabilities in the least restrictive environment argue KNI should have
been shuttered years ago.
Parkinson possesses authority to advance or block the commission's blueprint for reform at KNI. The governor visited the facilities in Topeka and Parsons. He's listened to parents, guardians, staff, advocates and state officials. Documentation tied to the debate is as thick as a telephone book.
The governor appears ready to reveal his findings, perhaps Tuesday, but his staff has been tight-lipped.
"Governor Parkinson is still collecting and reviewing information as he contemplates this decision," said Beth Martino, a spokeswoman for the governor.
Parkinson intended to make a decision before the start of the 2010 legislative session, but missed
the self-imposed deadline.
The Democratic governor has the power to outright reject the commission's recommendation,
approved on a 7-3 vote. That would spike the commission closure process as it relates to KNI. If
Parkinson issued an executive order putting the transfer into motion, only a majority vote by
either the House or Senate could derail consolidation.
House Speaker Mike O'Neal, a Hutchinson Republican, said the state's estimated $400 million
deficit in the upcoming fiscal year and the high per-capita expense of managing large institutions
could compel lawmakers to advocate for closure of KNI.
"The report makes sense to me, but I understand the families' angst," O'Neal said.
Stakes are high for the men and women with severe developmental disabilities who await their
fate. Nine out of 10 KNI residents have significant intellectual disabilities. Two-thirds can't walk,
while four of five are unable to speak. Nearly all have lived at the Topeka facility for more than a
decade.
Some parents and guardians have lobbied against consolidation, but disability service providers
insist treatment will be better outside KNI.
"I'm not convinced it will save the state anything in the long run," said Sen. Laura Kelly, a Topeka
Democrat.
Rocky Nichols, executive director of the Disability Rights Center of Kansas, said as much as $14
million could be saved each year by moving as many people as possible into community-based
facilities. Anyone who argues there would be little or no savings is being "incredibly intellectually
dishonest," Nichols said.
"I understand what it means to be parochial," said Nichols, a former House member from Shawnee County. "Their arguments are not steeped in reality." Rep. Lana Gordon, R-Topeka, said she wasn't convinced facilities in the community would be equipped to accommodate the influx of clients.
"I'm concerned this is an instance of penny-wise but pound foolish," Gordon said.
The Facilities Closure and Realignment Commission was adamant about one element of its
recommendation: Any savings from phasing out KNI must be earmarked for expanding in-home
services to those with disabilities who are on waiting lists in Kansas.
About 4,000 Kansans with developmental disabilities are on the Kansas Department of Social and
Rehabilitation's waiting list to receive services provided through Medicaid waivers. Some people
have been on the list five years.
Sale of state property where KNI is located in Topeka could be allocated for unmet needs of the
state's disabled residents, said Tom Laing, executive director of Interhab, a coalition of groups
serving the disabled.
Laing said state officials had a moral obligation to attack the waiting lists.
"No more waiting lists for vulnerable Kansans," he said. "When we sacrifice their interests, we
ultimately sacrifice our own."
The Topeka Chamber of Commerce, which opposes closure, says Topeka risks forfeiture of $66
million in annual economic activity tied to the institute. However, agitation about potential
economic losses in the Topeka area could be overstated because many residents will move to
housing in the metropolitan area and cause a ripple in employment.
Senate Minority Leader Anthony Hensley, D-Topeka, said he was skeptical the Legislature would
be disciplined enough to invest all of any savings in the waiting lists for services. Special interests
competing for scarce resources will be playing hardball, he said.
"There's no guarantee the money will follow the client," Hensley said. "The recommendation to
cut the waiting list has got to go through the appropriations process. And, quite frankly, I have my
doubts."
Nichols said the state's closure of Winfield State Hospital demonstrated the quality of life for
residents could improve outside a large institutional setting. Eighty-five percent of the 240
residents at Winfield transferred to the community, while 15 moved to KNI or Parsons.
"There's this perception that with KNI, you spend more money, you must get better outcomes at a
place like that," Nichols said. "It's the most crucial part of the post-Winfield closure study. People
experienced better outcomes when they left."
Nichols the state couldn't financially or philosophically justify operation of massive hospitals for
disabled people. For every person at KNI needing the highest level of services, he said, there are
about 30 people with comparable needs living in community-based housing.
"People will get that care somewhere," he said. "Just not from a state-run, large-bed congregate
warehouse."
Topeka — A coalition of health care and education groups on Friday said state budget cuts have caused serious harm to Kansas and called on legislators to consider tax increases to bridge the revenue shortfall. “More cuts will send Kansas into a decline from which it will take years to recover,” Kansans for Quality Communities said in a statement.
The group urged the Legislature, which starts the 2010 legislative session on Monday, to refrain from any more budget cuts. And the coalition said the Legislature should raise more revenue and consider tax increases, closing various sales tax exemptions, delaying the phase-out of some tax cuts, and also separating the state tax code from federal tax cuts that would reduce state revenue.
But when asked which sales tax exemptions should be eliminated, coalition members said they didn’t have a specific proposal. The state budget was cut five separate times in 2009, for a total of nearly $1 billion, and still lawmakers face a nearly $400 million shortfall in the next fiscal year. The coalition said those cuts have devastated services to the poor, elderly and people with disabilities, and hurt schools and public safety. “Our communities and our way of life are at risk,” said Cindy Rush, a certified nurse aide at a Topeka nursing home, and representative of the Kansas Health Care Association.
Mike Hammond, executive director of the Association of Community Mental Health Centers, said state budget cuts have put “the public mental health system at a breaking point.” Community mental health centers, which treat 123,000 Kansans each year, have sustained state grant cuts of 65 percent over the last three years, Hammond said. “These cuts have gone too far. We can no longer cut our way out of this crisis,” he said.
Shannon Jones, director of the Statewide Independent Living Council of Kansas, said funding cuts for home- and community based services will mean more vulnerable Kansans requiring more expensive nursing home care. “For the elected official, the easiest task is to cut programs and people. The more difficult task is saying to the citizens of Kansas that there are real and genuine needs for some of our fellow Kansans and we are not going to abandon them,” Jones said. Public school representatives said education cuts have produced larger classrooms, fewer instructional days and decreases in programs designed to help students who are struggling.
Karen Godfrey, vice president of the Kansas National Education Association, noted that the state has lost revenue through recent tax cuts that legislators said would increase economic development. “But we know that a strong education system is one of the most critical elements to economic development,” Godfrey said.
]]>Russell Hall and his wife, Eva, are saving the state of Kansas money — about $100,000 a year. Hall removed his 30-year-old daughter, Tabatha, from Topeka's Kansas Neurological Institute in 1991, and he and his wife have been caring for her in their home with the help of funds from a Home and Community-Based Services waiver for those with developmental disabilities.
The annual cost for housing and services at KNI is $148,526, while the average annual cost for a person on a HCBS waiver and living in the community is $35,663, according to the Disability Rights Center of Kansas.
"We're saving taxpayers money, but we're not getting that money," Hall said. Where those savings are being directed has become a point of contention as Gov. Mark Parkinson and lawmakers consider closing KNI and sending its residents into the community to live.
In late October, the Facilities Closure and Realignment Commission recommended KNI be closed and the institution's 158 residents be transferred to less-restrictive, community-based residential programs or to Parsons State Hospital.
KNI's closure is expected to free up about $5 million annually from the state's budget that could be used elsewhere.
Parkinson has the option of rejecting the commission's recommendation to close KNI, or the Democratic governor could issue executive orders to begin the transfer of KNI residents to community-based programs or Parsons State Hospital. Those orders could be blocked by one chamber of the Republican-controlled Legislature after it convenes Sunday.
The commission also recommended all savings from phasing out KNI — including money obtained from the sale of KNI property — be directed toward expanding inhome services to those with disabilities who are on waiting lists in Kansas.
About 4,000 Kansans with developmental disabilities are on the Department of Social and Rehabilitation's waiting list to receive home and community-based services provided through Medicaid waivers.
Some of the people on the list have been waiting for services since 2005. The commission recommended KNI residents being transferred into community-based programs be placed at the top of the roster.
Critics of the closure of KNI have expressed concern over moving people with profound disabilities into community-based housing programs. However, advocates say living in the community instead of in an institution increases opportunities and improves the quality of care for individuals.
For every person at KNI with the greatest severity of disability, there are 18 people living in the community with HCBS waivers with the same severity of disability, according to the Disability Rights Center of Kansas.
Ron Pasmore, president and chief executive officer of KETCH, said the 241 residents at Winfield State Hospital had two options in the mid-1990s when the facility closed: Transfer to a community-based program, or transfer to KNI or Parsons State Hospital. Only 36 were transferred to other state hospitals.
KETCH received 20 to 30 residents from Winfield State Hospital, he said. Prior to their transfers, KETCH staff met with the individual, Winfield staff and family members to make the transition into the community as smooth as possible. Pasmore said each former resident had a "startup fund" that could be used to pay for furniture, adaptive equipment and other items needed to set up a home.
At the time of Winfield's closing, about 800 Kansans with developmental disabilities were on a waiting list to receive community-based services. Because the money followed the residents into the community, Pasmore said the savings realized from closing Winfield not only provided housing and services to the former residents but also was enough to eliminate the waiting list.
Tom Laing, executive director of Interhab in Topeka, said the chances of KNI's closure eliminating the current waiting list is unlikely.
"KNI outcomes will be less dramatic than Winfield in terms of impact on the waiting list because the waiting list today is so much worse due to the lack of attention by this and the preceding administration," Laing said. "However, we can spend DD (developmental disability) resources more wisely by weaning ourselves from the institutional model."
]]>Russell Hall and his wife, Eva, are saving the state of Kansas money — about $100,000 a year.
Hall removed his 30-year-old daughter, Tabatha, from Topeka's Kansas Neurological Institute in 1991, and he and his wife have been caring for her in their home with the help of funds from a Home and
Community-Based Services waiver for those with developmental disabilities.
The annual cost for housing and services at KNI is $148,526, while the average annual cost for a person on a HCBS waiver and living in the community is $35,663, according to the Disability Rights Center of Kansas.
"We're saving taxpayers money, but we're not getting that money," Hall said. Where those savings are being directed has become a point of contention as Gov. Mark Parkinson and lawmakers consider closing KNI and sending its residents into the community to live.
In late October, the Facilities Closure and Realignment Commission recommended KNI be closed and the institution's 158 residents be transferred to less-restrictive, community-based residential programs or to Parsons State Hospital. KNI's closure is expected to free up about $5 million annually from the state's budget that could be used elsewhere.
Parkinson has the option of rejecting the commission's recommendation to close KNI, or the Democratic governor could issue executive orders to begin the transfer of KNI residents to community based programs or Parsons State Hospital. Those orders could be blocked by one chamber of the Republican-controlled Legislature after it convenes Sunday.
The commission also recommended all savings from phasing out KNI — including money obtained from the sale of KNI property — be directed toward expanding in-home services to those with disabilities who are on waiting lists in Kansas.
About 4,000 Kansans with developmental disabilities are on the Department of Social and Rehabilitation's waiting list to receive home and community-based services provided through Medicaid waivers.
Some of the people on the list have been waiting for services since 2005. The commission recommended KNI residents being transferred into community-based programs be placed at the top of the roster.
Winfield's closure
Critics of the closure of KNI have expressed concern over moving people with profound disabilities into community-based housing programs. However, advocates say living in the community instead of in an institution increases opportunities and improves the quality of care for individuals.
For every person at KNI with the greatest severity of disability, there are 30 people living in the community with HCBS waivers with the same severity of disability, according to the Disability Rights Center of Kansas.
Saundra Love, of Wichita, said she made "the hardest decision of my life" when she placed her daughter, Suzanne Dale, in Winfield State Hospital 33 years ago. Dale, now 38, has cerebral palsy and can't walk, talk or sit up by herself. She is unable to chew, so her food must be pureed.
"I knew her condition was permanent," her mother said, "and I couldn't care for her in the home." When Winfield closed in the mid-1990s, Dale was transferred to a community-based group home in Wichita operated by KETCH. Three other people with disabilities live in the group home with her.
"They were at first apprehensive about taking Suzanne because she would have the most needs of any client they'd ever had," Love said. "She would also be the most expensive client and require the most care."
Love said KETCH modified the home to accommodate her daughter's needs: Lifts and a hospital bed with side rails were installed, and doors were widened for her wheelchair. Because of the distance between Wichita and the state hospital, Love said she couldn't visit her daughter as often as she would have liked. Now, she visits Dale once a week, plus she has more frequent contact with the people taking care of her. "I had a lot of apprehension about all of those changes, and it's worked out better," Love said. Ron Pasmore, president and chief executive officer of KETCH, said the 241 residents at Winfield State Hospital had two options when the facility closed: Transfer to a community-based program, or transfer to KNI or Parsons State Hospital. Only 36 were transferred to other state hospitals. KETCH received 20 to 30 residents from Winfield State Hospital, he said. Prior to their transfers, KETCH staff met with the individual, Winfield staff and family members to make the transition into the community as smooth as possible.
Pasmore said each former resident had a "startup fund" that could be used to pay for furniture, adaptive equipment and other items needed to set up a home. "When a person lives in an institution, you don't have much," he said. KETCH's programs at that time were focused on improving vocation skills, so the agency added social and recreation programs to meet the needs of the Winfield transferees.
At the time of Winfield's closing, about 800 Kansans with developmental disabilities were on a waiting list to receive community-based services. Because the money followed the residents into the community, Pasmore said the savings realized from closing Winfield not only provided housing and services to the former residents but also was enough to eliminate the waiting list.
"The people were on the waiting list, not because there wasn't enough capacity to house them in the community, but because there was not enough funding to serve them once they were placed in the community," he said.
Tom Laing, executive director of Interhab in Topeka, said the chances of KNI's closure eliminating
the current waiting list is unlikely. "KNI outcomes will be less dramatic than Winfield in terms of impact on the waiting list because the waiting list today is so much worse due to the lack of attention by this and the preceding administration," Laing said. "However, we can spend DD (developmental disability) resources more wisely by weaning ourselves from the institutional model."
Catch-22
The Halls — who are saving taxpayers' money by caring for their 30-year-old daughter, Tabatha, in their home — were notified a few weeks ago that the money Tabatha receives from the HCBS waiver would be pared by 10 percent due to the state's budget crisis. The Halls had until Jan. 1 to decide what services their daughter could do without.
"We did it by cutting staff hours," he said, referring to two part-time workers who take Tabatha to the YMCA twice a week and supervise her so they can attend church. They were also notified Tabatha would no longer have dental coverage through Medicaid. "It's extremely difficult to do it on your own, but I'd rather have done this than kept her at KNI," Hall said. "She's doing a whole lot better now. The quality of care is the most important thing, but it comes with a price."
Pasmore said he is of "two minds" when it comes to the proposed closure of KNI. "Living in the community is a better choice for the (individual) because it's more of a normal life and there are more opportunities in that setting," he said. Closing KNI would mean about 500 workers would be displaced. But from a "practical standpoint," he said, the state needs to trim its budget to be economically sound.
Pasmore said the 10 percent cut to Medicaid's HCBS waivers, ironically, will affect former Winfield State Hospital and KNI residents who are now living in community-based programs that are saving the state money. "The cuts affect staffing, which then affects quality of services," he said. "It affects the levels of pay to staff, which is already lower than in institutions, and contributes to greater turnover of staff. "
Professionals who provide direct services at institutions are paid $12 to $12.50 an hour, while state reimbursements pay $8 to $8.50 an hour to employees who do the similar work in community-based programs.
"We'll get to the point," Pasmore said, "where we can't serve people because we can't hire people."
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