ADAPT

ADAPT Action Press Package:

• ADAPT's Ten Worst States. [html] [pdf]
• RESOLUTION: Commitment To Community-based Long Term Care Services and Support. [html] [pdf]
• End the Institutional Bias: No More Stolen Lives! By Bruce Darling. [html] [pdf]
• MiCASSA Summary. [html] [pdf]
• MiCASSA Talking Points. [html] [pdf]
• MiCASSA Questions and Answers. [html] [pdf]
• Good Health Care: for Rich People Only? By Arthur Caplan. [html] [pdf]
• Medicaid still busting state budgets. By Erin Madigan. [html] [pdf]
• Local tragedy inspires support for federal legislation. [html] [pdf]
• Nick Dupree Letter about Chris and MiCASSA. [html] [pdf]
• MEDICAID LONG TERM CARE DATA – 2003. [html] [pdf]
• FY 2003 MEDICAID LONG TERM CARE DATA - MISSISSIPPI. [html] [pdf]

Good Health Care: for Rich People Only?
Shocking Developments show what States may do to Control the Rising Costs of providing Medical care to People who Need Help

by Arthur Caplan

Just how bad is the state of health care in America? Well, consider two recent developments that shine a spotlight on a system that was already showing signs of severe distress, even before the Supreme Court decided to let HMOs off the legal hook. In Colorado the rich are paying what amount to bribes to make sure that they are at the head of the line when it comes to getting health care, and in Tennessee the poor are basically being told to get lost.

Denver was the setting a few weeks ago, when more than 100 physicians from around the United States attended the first meeting of the American Society of Concierge Medicine. Concierge medicine is a special, high-end form of medical care that guarantees that if you need treatment you will get it, without a hassle, seven days a week-but only for an extra fee. If you can pay amounts that range from $20 to thousands of dollars a month, you can guarantee that your phone calls will be promptly returned by your doctor and that you'll get special attention whenever you're admitted to a hospital.

Now, one might wonder why it is necessary to pay a bounty to get a doctor to call you back, especially if you are already paying through the nose to belong to a managed care plan. The answer is that under the watchful eye of managed care and insurance companies, the quality of care has gotten so awful that doctors sneeringly refer to it as "hamster care." Only those patients who pay more are going to get treated by the "concierge" doctors who get off the daily treadmill and practice good medicine, providing the sort of attention and service that our parents and grandparents took for granted.

Think that giving the rich special access to health care is unfair? Consider what is going on at the same time in Tennessee.

It is making over its state Medicaid program known as TennCare. If this program gets implemented, many of the poor, elderly, children and disabled in Tennessee who rely on Medicaid will be told simply to get over it. And other hard-pressed states may well follow suit.

Gov. Phil Bredesen, a former HMO entrepreneur, sees the challenge of health care for the poor in Tennessee in very stark terms. In a speech last February, the governor described the state Medicaid program as nothing more than an open checkbook that is continuously being raided by "doctors and hospitals and advocates" who "decide what is needed."

Well, who should be deciding what is needed for medical treatment if not doctors and hospitals and advocates? Not under TennCare, if the governor gets his way. Bureaucrats, not doctors, will pick how the poor get treated.

Historically, decisions about what drugs or treatments a patient received were chosen by a standard of care known as "medical necessity." Doctors determined what was medically necessary based on local standards of medical practice, and if they did not practice according to this standard they could be found guilty of malpractice. TennCare does away with the established standard and replaces it with a new one - "adequate care." If a bureaucrat in the Tennessee department of health thinks a low-cost drug or treatment, or even no treatment at all, is "adequate," then that is what TennCare will provide.

Under the new definition, preventive care and many pain medications will no longer be funded. And only generic drugs will be available to treat poor kids with life-threatening conditions such as cystic fibrosis, cancer or asthma, and no prescription antihistamines or gastric-acid reducers for anyone of any age. If you want to protest these inadequacies, you might be able to find a doctor willing to plead your case to a special state-established foundation.

No one wants to see any state dissolve in a sea of red ink. But how can any American stomach a public health care system that is so unfair to people who aren't rich? Surely there are less drastic steps a state like Tennessee could take that would let doctors decide what is appropriate care for children, the disabled, the chronically ill, pregnant women and the elderly poor.

Those now seeking public office must come up with something better than medicine prescribed by bureaucrats. Whatever solutions they arrive at, doctors must be in charge of our heath. That is something to remember when we enter the voting booth in the fall.

Arthur Caplan is chairman of the department of medical ethics and a professor of bioethics at the University of Pennsylvania. 

Copyright © 2004, Newsday, Inc
Published on Wednesday, June 30, 2004 by Newsday / Long Island, New York

Thursday, June 24, 2004

Medicaid still busting state budgets

By Erin Madigan, Staff Writer, Stateline.org 

Retired factory worker Donna McNeil said she panicked when she received “The Letter” earlier this month notifying her that she is among 65,000 Mississippians who next week will lose health care coverage through Medicaid, the state-federal health program for the poor and disabled. 

“They can’t do this,” she told Stateline.org in a telephone interview. 

McNeil, a 50-year-old resident of Glen, Miss., said she immediately called Republican Gov. Haley Barbour’s office, her congressman and even the White House to protest the dramatic health care cuts Barbour approved May 26. 

“I started calling everybody in the country to try and figure out what was going on,” McNeil said. “The only answer I can come up with is that the governor of Mississippi is trying to save the state some money because it’s in the hole.” 

Mississippi’s Medicaid rollback, although the most drastic to date this year, is just one of several health care cuts looming in the states. Despite a recent uptick in state revenues, many states still are struggling to maintain services and avoid restricting the health care program that serves as a safety net for about 50 million Americans. 

“I have not heard a lot of optimism from the states when you consider how much the Medicaid program has been growing,” said Neva Kaye, who studies Medicaid at the National Academy of State Health Policy in Portland, Maine. “There is some hope for the future, but there is still some concern that (states) are picking themselves up out of a budget crisis and there may be some hard looks taken at Medicaid.” 

Medicaid already consumes more than 20 percent of state budgets. State spending for its share of the $300 billion program has increased 11.3 percent over the last three years, and the federal government estimates continued growth over the next 10 years, according to a recent article by Raymond Scheppach, executive director of the National Governors Association. “This is in spite of the fact that virtually every state cut reimbursement rates as well as optional populations and benefits and restricted drugs purchases through the use of formularies,” he wrote. 

The federal government requires states to provide a minimum level of services through Medicaid, so states are limited as to what they can trim to control costs. 

McNeil, who worked in a factory for 23 years, currently makes a co-payment of no more than $3 each for four prescription medicines she takes for the severe depression that keeps her from her job. However, when the cuts take effect July 1, she’ll have to pay for these and other medical bills out of pocket. “My medicines are very expensive, and I am scared to call and see how much they are,” she said. “I just wish I knew what to do to get the governor to change his mind.” 

McNeil’s parents, who are both in their 80s, also will lose Medicaid coverage at the end of the month. 

Mississippi officials say the cutbacks are needed to help plug the state’s $709 million budget deficit and are part of a larger Medicaid makeover that will save the state about $106 million in fiscal 2005. The vast majority of patients being cut from Medicaid are expected to qualify for federal Medicare assistance. 

Barbour hopes the changes will improve access to health services for the 720,000 people still in the program, which serves about 25 percent of state residents, said Francis Rullan, a spokesman for Mississippi’s Medicaid program. 

When the new federal Medicare law begins in earnest in January 2006, poor, elderly beneficiaries may receive better health care assistance than the state had helped provide through Medicaid, Rullan added. In addition, he said the state is petitioning administration officials in Washington, D.C., for additional transitional assistance to help tide over some patients who don’t qualify for Medicare. 

Advocates for those being cut – low-income retirees and disabled citizens who annually earn about $13,000 for an individual or $17,000 for a couple – say that paying for medical bills will be difficult for these patients and that the cuts may force them to cut back on basic needs such as food or rent. They are pushing the governor to call a special legislative session to delay the cuts. 

In addition to Mississippi, several other states are poised to make cutbacks in Medicaid: 

• Oregon will freeze enrollment and begin making additional cuts in its Health Plan Standard program, which covers adults who do not qualify for traditional Medicaid but have incomes at or below the federal poverty level. The state wants to cut the number of beneficiaries from 50,000 to 25,000 by June 30, 2005.
 
• In Georgia, about 1,700 nursing home patients scheduled to be cut from the state Medicaid rolls on July 1 were given an extra 90 days – until October 1 – to find other ways to pay for their care.
 
• Michigan Gov. Jennifer Granholm (D) signed a 75-cents-per-pack cigarette tax June 24, sparing the state from having to cut payments to health care providers who serve Medicaid patients, the Detroit Free Press reported. The new tax becomes effective July 1 and is expected to generate an additional $97 million in fiscal 2004, which ends September 30, said Bill Nowling, press secretary for state Sen. Majority Leader Ken Sikkema (R).
 
• In Tennessee, Gov. Phil Bredesen (D) wants to curb Medicaid costs by limiting patients to six prescriptions a month and 10 doctor visits a year, but his plan is facing strong resistance and a court challenge by advocacy groups in the state, the Tennessean, a Nashville newspaper reported.

To rein in costs in the long term, California, Florida and New Hampshire are expected later this summer to request permission from the federal government to make major changes to their Medicaid programs that could reduce benefits below what the federal government currently requires, said Cindy Mann, a research professor at Georgetown University’s Health Policy Institute.

Special Report - Local tragedy inspires support for federal legislation

http://wpmi.com/news/local/story.aspx?content_id=607C0C79-1660-4B20-8D43-823B2F1F7093

5/19/2004 

(MOBILE, AL) May 18 -- A tragedy close to home is getting national attention. Mark and Denise Wiggins were forced to care for their son, Chris, 24 hours a day because the state cut him off, only offering to provide care in an out-of-state facility. His parents believe had a nurse been able to help them out, their only son would be alive today.

Chris had muscular dystrophy, lived on a ventilator and required 24-7 care. But Alabama Medicaid cut off his at-home nurse on his 21st birthday. NBC 15 reporter Bruce Mildwurf spoke to Chris about that almost 3 years ago. "They expect me when I'm 21 to all of a sudden to get well and not need nursing care." he said.

Medicaid would only pay for Chris' care in an out-of-state nursing home. For Mark and Denise, that was never an option. "The system should be there to help. No parent should have to visit their child in a cemetery." Denise said.

Denise visits her son's gravesite several times a week. She keeps thinking tomorrow will be easier, but each day is as tough as the one before. "The first thing every morning is really hard because it hits you fresh again." Denise added holding back tears, "We loved him so much."

Chris was 26 years old when he died in March. His ventilator tube popped loose and no one heard the machine's alarm go off. Denise said, "It's a minute at a time. You think at times you can do it day by day, but I can't."

For years the Wiggins' lobbied for change and pleaded for help. During our interview with Chris three years ago he said, "It's tough to get politicians to pay attention to you, you know. You got to make a good bit of noise."

Unable to make anymore noise Chris is finally being heard. NBC15 aired his story the day Chris was buried and showed it to Congressman Jo Bonner. "It breaks your heart," he said. "It's sad there have to be tragedies like this."

Bonner added, "Ya'll (NBC 15 News) have done a great job of putting the spotlight on it and hopefully the more people see it, and hear it, and understand, it's fundamentally, if not unconstitutional, it's certainly not fair."

Bonner is now trying to help fix the system many blame for Chris' death. He is co-sponsoring legislation called MICASSA http://www.adapt.org/casa/talkingpts.html which stands for Medicaid Community-Based Attendant Services. "And what MiCASSA legislation will do if we can get it passed and signed into law is the money would follow the individual." Bonner said.

Under the current system, 75-80% of Medicaid's long-term care dollars is directed to nursing homes and institutions. 20-25% stays with the individual. The proposed MICASSA bill will give people the choice of where and how to be cared for. It favors families not facilities.

According to Bonner, "It won't cost the taxpayers another penny and yet it will give an individual the opportunity for a better life."

Nick Dupree lives in Mobile. He was a long time friend of Chris'. "I feel angry, sad, depressed." he added, "I hope Bonner's backing means more people in Congress will support it."

Nick was in a similar situation as Chris when he turned 21. Nick also has muscular dystrophy and takes every breath through a ventilator. But Nick sued the State of Alabama and Medicaid. Weeks before Nick's birthday, Medicaid was forced to maintain care at home for 30 Alabamians. Considered too old, Chris was not eligible for it.

Nick said, "I was fighting for Chris. I was fighting for Chris and it's devastating that we all failed. We all have his blood on our hands, basically."

Denise is extremely angry her son got overlooked, adding "Most people that need this help have done nothing to bring it on themselves. They deserve to have whatever help and support they need. If it means having a nurse at home, that is what they should get."

Still, Chris made the most of his situation. He had a data entry job from home. Bonner points out that with MICASSA tax users can become tax payers.

Chris was an avid collector of Pez dispensers, Star Wars characters, movie figurines and music. It's still difficult for his parents to go in his bedroom. Denise said, "Going in there and seeing Christopher's collections. That's a positive thing for me. The medical equipment, that's the bad part. The medical equipment is a reminder of the hell Christopher went through. It's a reminder these kids do get pushed aside."

So now Denise is pushing back. "I think this is what Chris would have wanted. I'm still fighting for Chris."

Jo Bonner's office said the MiCASSA legislation now has 96 co-sponsors. Bonner said if you want to support this bill, it's important to call, write or email as many people in Congress as possible. "It's imperative they know the citizens believe this is an important issue." added Bonner.

Bonner expects the nursing home industry to oppose the legislation.

For a list of email addresses for Senators and U.S. Representatives, you can contact, 
click on this link: http://www.firstgov.gov/Agencies/Federal/Legislative.shtml 

Nick Dupree Letter about Chris and MiCASSA

Hi everyone, all my friends and allies:

Back in January, I met with the US Congressman for this district, Jo Bonner (R - AL 1st) and presented my case for MiCASSA, the bill I've been pushing that mandates states to provide the home care option to their Medicaid recipients, to him along with director of Mobile Independent Living Center, Michael Davis. He said Michael and I were "the most eloquent spokesmen for your cause" he'd ever heard. Bonner said it'd be hypocritical of him to back Nick's Crusade last year but not sign on to MiCASSA.

Not long after this meeting, Bonner became the first Alabamian to sign on to such a home care bill in American history. YES!!!! Round of applause for Bonner!

This is groundbreaking progress for this state, but the devastation here has not abated.

It's not enough.

On the ground, things aren't changing, they're getting worse for the actual families living it. Since March I'm mourning my childhood friend Chris' death. Why is it? I WISH I DIDN'T understand it. Basically it's because this country didn't think it worthwhile to keep him here. Chris' Mom recently brought me old photos of me with Chris when I was 3 or 4 years old. I fought like hell and couldn't get Chris his care back after he was cut off at age 21. Whatever we are doing now, it isn't working. If it was working, I wouldn't be using Chris' medical supplies right now instead of him. More Chrises are out there right now with no support.

I will continue with my hands on approach to get people the supports needed to achieve community inclusion instead of death. I have an aggressive Noah's Ark-like mentality, we have to get every person in the community boat before they drown with no supports to keep them afloat. Chris washed away. Many die in the community due to lack of needed support, many die in institutions due to lack of needed support (I contend needed natural supports aren't even POSSIBLE in the institutions -- a family/spouse can't live in an institution with you, for example).

Still more people are stuck in their rooms at home wasting their years due to lack of needed support to include them in community, their spirit withering without freedom. My efforts are about saving lives, both physical and emotional.

It should be clear to everyone looking at America's health system that we're resting with increasing heft on a glaring swiss cheese safety net here. Please forward the below news article about Chris' death and MiCASSA until EVERYONE knows.

Peace,

Nick

MEDICAID LONG TERM CARE DATA – 2003
(September 2002 through September 2003)

Total Medicaid $ 259.60 billion
Total Long Term Care $ 83.84 billion

Long Term Care makes up 32.3% of Medicaid

Nursing Homes $ 44.78 billion
ICF/MR (public) $ 6.82 billion
ICF/MR (private) $ 4.48 billion

Total Institutional $ 56.08 billion 66.8% 

Personal Care $ 6.30 billion
HCBS Waivers $ 18.57 billion
Home Health $ 2.89 billion

Total Community $ 27.76 billion or 33.2% of Long Term Care

HCBS WAIVER BREAKDOWN 2003 BY CATEGORY

Total HCBS Waivers $ 18.57 billion 

Numbers are taken from a report by MEDSTAT (www.medstat.com) The MEDSTAT Group Inc. – (617) 492-9300. MEDSTAT data taken from CMS 64 reports submitted by the states. Compiled by ADAPT – June 2004 (All numbers are rounded off) www.adapt.org 512/442-0252

FY 2003 MEDICAID LONG TERM CARE DATA MISSISSIPPI

NURSING HOMES $ 503.63 million 
ICF-MR $ 184.00 million 

Total Institutional $ 687.63 million or 87.15% approx

PERSONAL CARE -0-
HCBS WAIVERS $ 86.94 million
HOME HEALTH $ 14.42 million

Total Community $ 101.36 million or 12.85% approx 

Total Long Term Care $ 788.99 million

FY 2003 HCBS WAIVER BREAKDOWN

Waivers 4

Total Expenditures $ 86.93 million

Data Compiled by ADAPT June 2004 www.adapt.org 512/442-0252. Data taken from MEDSTAT who has contract with CMS to compile Medicaid data www.medstat.com 617/492-9300