JFActivist

AAPD Testifies about Patient and Provider Concerns in Transition to Electronic Health Records

From AAPD (4.29.11):

Accessible Health Information Technology: AAPD Testifies to HHS

On April 21, 2011, AAPD's Senior Director for Government Affairs Jenifer Simpson testified to a federal advisory committee on the need for accessible and usable health information technology. This federal committee was formed by the Office of the National Coordinator for Health Information Technology at Health & Human Services (HHS-ONC). The “Hearing on Usability” included one panel on "Consumer Perspectives" where AAPD testified.  This panel included several consumer groups raising concerns about the lack of a consumer or patient focus as health information technology advances. With health care reform being implemented at the federal, state and local levels, there’s much work going on to increase the amount of information technology (IT) used by health care providers and patients. Committee members listening included the newly appointed HHS National Coordinator for Health Information Technology, Farzad Mostashari, MD, ScM.

AAPD’s perspective is both from the needs of health care consumers and for health care workers using these systems, and who may have disabilities. These electronic systems may involve Electronic Medical Records (EMRs) or Electronic Health Records (EHRs) or consumer Personal Health Records (PHRs), all of which can be part of the health care service delivery infrastructure. With 20% of the U.S. economy involved in health care, we all want to be sure these IT systems work for all users, whether patients or employees of health care delivery services.

At the hearing: AAPD's statement focused on usability for people with disabilities of EHRs and the need for more effort to be made to raise consumer awareness about electronic health records. AAPD commented on the need for accessibility and usability, that accessibility and usability are separate notions, on the need for security and privacy in electronic medical recordkeeping for people with disabilities who can face discrimination based on disability and medical status, and how consumers with disabilities see themselves as the “owners” wanting to control their own medical information.

There was considerable discussion at this HHS hearing about electronic health records currently in use at many hospitals and medical practices. It became clear that many health care providers, including doctors, nurses and other clinicians are not happy with the current status of EHR usability. They said things like “it takes too long to enter data”, “we want less clicks and screens to wade through,” “we can’t find the right screen,” or “we don’t do usability well in team-based care as we often can’t find the critical data.” Interestingly, several of the nursing and clinician statements on usability focused on how they believe EHR systems do not reflect the typical “work flow process” of health care workers and clinicians. Others raised concerns about how to pay for the time implementing and using these systems.

Dr. Stanley Wienapel, a physiatrist who is blind, and a member of the National Federation of the Blind, testified about his concerns that new systems would not work with his screen reader system (JAWS) and the optical character reader (OCR) system he uses for reading medical literature. He also mentioned the needs of wheelchair users and others with physical disabilities in accessing IT equipment.

Advocacy Action:

1.      Read the April 21 HHS ONC “Usability hearing” witness statements online at http://healthit.hhs.gov/portal/server.pt?open=512&objID=1473&&PageID=17117&mode=2&in_hi_userid=11673&cached=true#042111

2.      Take a few minutes to comment today about accessibility and usability for people with disabilities in another health information technology open docket.  This is the Federal Strategic Plan for Health Information Technology at http://healthit.hhs.gov/portal/server.pt?open=512&objID=1211&parentname=CommunityPage&parentid=2&mode=2, comment period closes May 6.  For instance, provide examples of access barriers you have encountered and/or  recommend strategies for change such as adoption of Section 508 Information Technology accessibility standards or WCAG 2.0 website standards, etc.

3.      For a copy of AAPD’s statement, or for further information, send email to [email protected] with “health information technology” in the subject line.

Urgent Alert: Advocate for Medicaid During Congressional Recess

                    Urgent Action Alert!

 

Contact your Representative and Senators during the Congressional Recess (Monday April 18- Friday April 29) to advocate against current House proposals to slash funding for Medicaid. Talking Points, Action Steps and Contact Information for Senators and Representatives is below.

Background:  The recent budget proposal in the U.S. House of Representatives would seriously undermine the Medicaid program. Medicaid provides critical health coverage to 8 million Americans with disabilities who rely upon Medicaid for long term services and support, including prescription drug coverage, durable medical equipment, and  facilities and services which  permit them to live and work in the community, avoiding costly institutional care.

This proposal would reduce Medicaid funding for the next ten years by a total of $772 billion below the level of a status quo program. This is a reduction of about 35%. In addition, the proposal would make the reduced funding a cap on the program (the so-called block grant). By contrast, the existing program does not have a cap and is an entitlement program in which federal funding will cover a share (averaging 57%) of the expenses of a state’s approved Medicaid program. If enacted, the States would have the burden of limiting their programs to deal with the reduced federal support. The reductions made by the state could take the form of curtailing covered services, capping enrollment, and imposing high premiums and co-payments for beneficiaries.

Policy Considerations: The Congressional process for this proposal is likely to be drawn out. At this time there is no definite scenario for how and when Congress will consider proposals to cut Medicaid. There are a number of possibilities.

1. Medicaid cuts are now in issue in the Congressional Budget resolution that, if passed, would establish dollar limits for Medicaid funding.  If limits are set, the details, such as converting the program from an entitlement program to a program of capped blocked grants, would be dealt with in subsequent legislation. At this time, there is a good possibility that the House and Senate will not be able to agree on a budget resolution, as has happened in the past.  Even if no budget resolution is adopted Congress is still able to go forward with legislation to fund the government.
2. The next opportunity to impose general spending caps is likely to be when legislation is considered to raise the debt ceiling on the amount of the debt the federal government can issue. The federal government’s debt is expected to reach the current ceiling by May 16. The Administration has stated that if the ceiling is not raised by July 18, the government will be unable to make payments on existing debt.  This would have catastrophic effects on interest rates in domestic and international markets. Unlike the budget resolution, the debt ceiling bill is “must pass” legislation.

Outlook: There is speculation that conservatives will refuse to support legislation to raise the debt ceiling unless accompanied by legislation requiring limits on federal spending.  Possible limits on spending could take many forms, but most likely they will be general and the battle will continue over follow-up legislation to develop detailed proposals for individual programs such as Medicaid. On another track, President Obama has announced a plan for bi-partisan negotiations between the Administration and the Congress, with the goal of reaching an agreement on the overall budget by June.

The battle over cuts in Medicaid is likely to be prolonged, and involve a series of critical decisions and votes. It is important that the opponents of Medicaid cut proposals express opposition early and often.  Even if all details of Medicaid are not an issue in proposals for general spending cuts, the structure of these general spending cut proposals will affect the likelihood that similar proposals will ultimately be adopted. At all times, Members of Congress need to be aware of the serious consequences to people with disabilities of drastic cuts in Medicaid.

The Congressional recess beginning the week of Monday April 18 to Friday April 29^th is a good time for advocates to educate their Congressman and Senators who will be in their home districts and states during the recess.

Suggested Talking Points:

• Medicaid is critical for the health care of 8 million people with disabilities.
• Medicaid pays for wheelchairs and prosthetic devices for people with disabilities such as spinal chord injury, cerebral palsy and other disabilities.
• Medicaid pays for prescription drugs for persons with mental illnesses and epilepsy and other medical conditions.
• Medicaid pays for programs to enable people with intellectual disabilities to live and work in the community.
• Medicaid’s Early and Periodic Screening Diagnosis & Treatment program helps identify disabilities early for children with disabilities and gets them the care they need.
• The proposal would undermine these important benefits by reducing funding for Medicaid for the next 10 years by $772 billion, compared to continuation of the status quo.
• The proposal does not establish specific reductions in Medicaid to enable the program to operate under reduced funding. States will have to make changes to afford to continue Medicaid with significantly less federal support and this proposal leaves it to the States to decide how to cut back on their programs. This could impact many of the current waivers that support community-based living for people with disabilities. Changes must be carefully considered to be certain they will not have a disproportionate impact on people with disabilities who rely on Medicaid to enhance their ability to live and work in the community.

Action Steps:

1. Call your Senators and House Representative today in their local state offices to set up a time to meet between Monday April 18 and Friday April 29th. To find your U.S. Senator, go to http://www.senate.gov/general/contact_information/senators_cfm.cfm  This list includes their Senate address and phone numbers.  To determine who is your U.S. Congressional Representative, please go to the official site at https://writerep.house.gov/writerep/welcome.shtml  To find out your U.S. Congressional Representative’s local address and phone numbers, go to http://www.house.gov/
2. If you can only get a meeting with a staffer person, do that too.
3. If you or someone you know with a disability benefits from Medicaid directly, be sure to mention that at the meeting.
4. Be sure to write a letter using the Talking Points above or organize a Medicaid Letter Writing event.
5. Be sure to include your name and address in the letter and state that you are a “registered voter.” 
6. If you are not a registered voter, go to your state election website at http://tinyurl.com/29x7g5a   and register today!
7. Let AAPD know what you hear or learn in your meetings or in mail response by sending an email to [email protected]
8. Please circulate this Action Alert to others and encourage them to enter this big budget debate.
9. Thank you for everything you do to keep disability programs well-funded and driven by good policy!

AAPD’s Action Alert is written by David Heymsfeld, AAPD Member and Jenifer Simpson, AAPD Senior Director for Government Affairs.

NH Representative Advocates Eugenics for "the Defective People"

Update from the Concord Monitor (3.15.11):

Eugenics lawmaker resigns
By Shira Schoenberg

State Rep. Martin Harty resigned yesterday, facing outrage from constituents, colleagues and strangers over comments he made endorsing eugenics for what he called "defective people."

Harty, a 91-year-old Republican from Barrington and first-term representative, submitted a hand-written letter of resignation to House Speaker William O'Brien.

"I was just getting the hang of it some, but with all the slightly unfavorable publicity I've been getting the last few days I'll never be an effective lawmaker," Harty wrote. "Sorry my big mouth caused this furor."

O'Brien said Harty came to his office to personally offer his resignation. The resignation will become official today, and a special election will be held to fill his seat...

...Party leaders from both sides of the aisle cheered the announcement...

>>> For the Full Article 

From the Concord Monitor (3.11.11):

Lawmaker advocates eugenics

By Shira Schoenberg

A 91-year-old state representative told a constituent that he believes in eugenics and that the world would be better off without "defective people."

Barrington Republican Martin Harty told Sharon Omand, a Strafford resident who manages a community mental health program, that "the world is too populated" and there are "too many defective people," according to an e-mail account of the conversation by Omand. Asked what he meant, she said Harty clarified, "You know the mentally ill, the r#t@rded, people with physical disabilities and drug addictions - the defective people society would be better off without."

Harty confirmed to the Monitor that he made the comments to Omand. Harty told the Monitor the world population has increased dramatically, and "it's a very dangerous situation if it doubles again." Asked about people who are mentally ill, he asked, apparently referring to a lack of financial resources, "Can we afford to bring them through?"

Harty said nature has a way of "getting rid of stupid people," and "now we're saving everyone who gets born."...

Omand says Harty then stated, "I wish we had a Siberia so we could ship them all off to freeze to death and die and clean up the population."

Omand said Harty appeared to be serious. After Omand responded that his idea sounded like what Adolf Hitler did in World War II, Omand said Harty responded, "Hitler did something right, and I agree with (it)."

Harty told the Monitor he was "just kidding" about Siberia. He denied making the comment about Hitler and said it was Omand who brought up Hitler...

>>> For the Full Article

From the JFA Moderator:

It takes a lot to shock me, but this article did.  To be fair, the rest of the article indicates that Harty may be developing age-related dementia or possibly alzheimer's disease, so most of my outrage is targeted toward the voters who gave him the power to decide to stop funding programs for PWDs and toward the other republican representatives who are more than willing to write off these horrifying statements. 

If he were just a wacky retiree I might be more forgiving, but the fact is that he is casting votes that will determine if mental health programs are closed or how much of the state budget is allocated toward services for PWDs.  I agree with Laura Brahlek who posted to the AAPD fan page, "Those committee members who work alongside this man should be embarrassed and urge him to quit his post for health reasons."

Call for his retirement:

Call Representative Harty at (603) 664-2620

Call Governor John Lynch at (603) 271-2121

Call the House Speaker William O'Brien at (603) 271-3661

Call the House Majority Leader at (603) 271-3665

Tell them "Representative Harty needs to retire."

Will Med Tech Innovations Benefit PWDs?

From AAPD (2.8.11):

From Websites to Biotechnology: Will Med Tech Innovations Benefit People with Disabilities?

By Daniel Dwyer, AAPD Policy Intern

To learn more about innovations in medical technology and how this might affect people with disabilities, AAPD attended a symposium entitled “Medical Innovation at a Crossroads: Choosing the Path Ahead,” hosted by the Council for American Medical Innovation (CAMI) in January, 2011, held in Washington, DC.  The symposium focused on three key components that drive medical innovation and that the organizers assert are essential to any effort to restore U.S. leadership: the federal government, the private sector and research/educational institutions.  While people with disabilities were not specifically mentioned, it is clear that what happens in this area will impact our lives both from the healthcare and employment perspectives. Speakers noted that the healthcare industry is the largest segment of the U.S. economy and how in one recent week, 34,000 new jobs were created in healthcare. 

The speakers included U.S. Chief Technology Officer Aneesh Chopra, and Fareed Zakaria, the Editor-at-Large of Time and host of CNN’s Fareed Zakaria GPS.  There were also panels which included former U.S. House Majority Leader Dick Gephardt (Co-Chair of CAMI), President and CEO of PhRMA John Castellani. Also speaking were USAgainstAlzheimers founder George Vrandenburg and Mike Leavitt, now a Co-Chair of CAMI and former governor of Utah as well as a former Secretary of Health and Human Services. 

Speakers noted that while many in Washington are sounding the alarm about the federal deficit and excessive spending, the participants believe that an infusion of funding from the government is essential to maintaining U.S. competitiveness in medical innovation.  Speakers also noted that while the United States is still the largest economy in the world, it no longer leads the world in medical innovation, as indicated by a shrinking percentage of overall patents filed by the U.S.  In fact, according to the Information Technology and Innovation Foundation, the U.S. ranked dead last in innovation progress over the last decade.  

Federal Role:  Aneesh Chopra explained that the Administration is acting as a “convener,” bringing industry, research institutions and the government together to undertake a collaborative effort to come up with new and innovative ways to administer healthcare and foster the development of medical advances.  One example is a personal health record (PHR) system for veterans via an online Department of Veterans Affairs website. This allows veterans to download their personal health file by clicking on a “blue button.”  Another example are innovation competitions: one run by the Department of Commerce focused on reducing the time it takes for medical and bioscience technologies to go from inception to commercial production. This resulted in a $1 million award to support biotechnology businesses in Akron, OH that will bring in manufacturing jobs to make low-cost medical devices.

Private Sector:  Speakers noted there are just not many businesses that focus on medical innovation.  They said that 75% of every healthcare dollar spent is for chronically ill patients, most of whom have preventable illnesses. They believe that business should help spur innovation to develop ways to prevent and treat these illnesses, freeing up funds to be spent in other areas.  They complained that there is insufficient funding for research and development (R&D) by the federal government and, according to participants of the symposium, the current R&D tax credit should be made permanent.  Speakers asserted that progress in the U.S. to improve healthcare while reducing overall costs can be done by information technology.  One example is a body patch which collects more data than a bulky monitor for a person’s heart rhythm.

Research/Educational Institutions: Speakers noted that research institutions and universities play a crucial role in medical innovation with scientists and researchers from around the world still coming to the U.S. to study and learn.  Increasingly, however, they are returning to their native countries to work professionally and not staying in the U.S. due to economic realities and cultural changes.  Speakers said the U.S. should encourage more American students to study science and try to retain more of the foreign students. One policy change might be to reform the H1B visa program which, they said, prevents talented students from staying here.  The program can also prevent companies from bringing their own foreign employees to the U.S. More funding for the National Institutes of Health (NIH) and Food and Drug Administration (FDA) was also suggested as a way to help the situation.

Conclusion:  This conference’s experts estimate that healthcare will be the primary contributor to rising federal deficits over the next 20 years, with the costs of programs like Medicare and Medicaid consuming funds that could be used for savings elsewhere.  Therefore, they believe investments that promote medical innovation in the public and private sectors are vital to reducing these healthcare costs and they support targeted investments in innovation as an essential part of any economic recovery for the nation.

Comment below:

1. Do you think there is enough medical technology innovation and if not, why do you think that’s so?
2. What sort of things can you see developing with medical and information technology that would benefit you?
3. Do you think the federal government should spend more on medical technology innovation?

 

 

When America believed in eugenics

From the New Statesman (12.10.10):

When America believed in eugenics
by Victoria Brignell

In the second of her series to mark disability history month, Victoria Brignell investigates America's past enthusiasm for eugenics and the profound suffering this inflicted on disabled people.

In the decades following the publication of Darwin's Origin of Species, a craze for eugenics spread not only through Britain but through America as well. Overbreeding by the poor and disabled threatened the quality of the human race, American campaigners warned. Drastic measures must be taken to avert a future catastrophe for humanity.

Amid popular fears about the decline of the national stock, one of the main drives behind the formation of American immigration policy at the end of the 19th century was the desire to exclude disabled people. The first major federal immigration law, the Act of 1882, prohibited entry to any 'lunatic, idiot, or any person unable to take care of himself or herself without becoming a public charge.'...

...In 1937, a Gallup poll in the USA found that 45 per cent of supported euthanasia for "defective infants". A year later, in a speech at Harvard, WG Lennox argued that preserving disabled lives placed a strain on society and urged doctors to recognize "the privilege of death for the congenitally mindless and for the incurable sick". An article published in the journal of the American Psychiatric Association in 1942 called for the killing of all "retarded" children over five years old...

>>> To Read the Full Article Chronicling the Eugenics Movement in the US

Does Social Security Incentivize Medicating Kids with Disabilities

From the JFA Moderator:

A recent Boston Globe Report investigates the perceptions in low-income communities that a child is more likely to qualify for SSI benefits if they are on perscription medication.  The article spoke with one mother who reported that the application for SSI played a role in her decision to begin giving her son ADHD medication.

Read more and Comment below.

From the Boston Globe (12.12.10):

A legacy of unintended side effects

by Patricia Wen

Geneva Fielding, a single mother since age 16, has struggled to raise her three energetic boys in the housing projects of Roxbury. Nothing has come easily, least of all money.

Even so, she resisted some years back when neighbors told her about a federal program called SSI that could pay her thousands of dollars a year. The benefit was a lot like welfare, better in many ways, but it came with a catch: To qualify, a child had to be disabled. And if the disability was mental or behavioral — something like ADHD — the child pretty much had to be taking psychotropic drugs.

Fielding never liked the sound of that. She had long believed too many children take such medications, and she avoided them, even as clinicians were putting names to her boys’ troubles: oppositional defiant disorder, depression, ADHD. But then, as bills mounted, friends nudged her about SSI: “Go try.’’

Eventually she did, putting in applications for her two older sons. Neither was on medications; both were rejected. Then last year, school officials persuaded her to let her 10-year-old try a drug for his impulsiveness. Within weeks, his SSI application was approved...

>>> For the Full Article

Genetic Privacy Manual Available

From The Council for Responsible Genetics (12.1.10):

The consumer is faced with almost daily risks to their genetic privacy from human health and reproductive technologies to the criminal justice system.  The consumer needs an understanding of the science, the privacy risks involved in releasing genetic information in various contexts and the degree of legal and regulatory protection available. The Council for Responsible Genetics’ Genetic Privacy Manual is  a comprehensive, electronic source of information for the consumer on these issues.  The manual can be accessed at the following url: www.councilforresponsiblegenetics.org/geneticprivacy

IL: Families Fight To Care For Disabled Kids At Home

From NPR (11.8.10):

Families Fight To Care For Disabled Kids At Home

by Joe Shapiro

...Olivia Welter is 20 years old and gets... life-saving medical care through a program provided by Illinois' Medicaid program. But it's a program for children. And when Olivia Welter turns 21, at the stroke of midnight on Nov. 9, she is no longer eligible for that care.

"There's not going to be any magic transformation between Nov. 8 and Nov. 9," says the young woman's mother, Tamara Welter. "She will be the same Olivia, with the same challenges and the same care needs."

There are about 600 children with severe disabilities in Illinois who get care through the same in-home program for "medically-fragile and technology-dependent" children, and thousands in other states around the country...

..."I've had doctors, a couple of doctors, who have questioned a decision about doing something for Olivia, kind of on the basis of: Is she worth it? I've looked them in the eye and said, 'Don't you dare say that to me. Do you have children? What would you do for your child?' I think society can look at a person like Olivia and say, 'What can she contribute?'"

...when she turns 21, the state changes how it measures cost. For an adult, the state says the alternative is no longer a hospital — it's a less expensive nursing home.

The state will pay for the Welters to send her to one, although there are none nearby that would take her.

And even if they sent her to a distant nursing home, John Welter doubts his daughter would get the close attention she needs to stay alive.

"We cannot bear the thought of having Olivia in a home or a care home," he says. "Because we would be afraid that in any ten minutes, her life could be put in danger. Or less — in any three minutes. It would be agonizing, day to day to day."...

>>> For the Full Article

EEOC Finalizes Law Prohibiting Genetic Discrimination

From the EEOC (11.9.10):

EEOC ISSUES GENETIC INFORMATION NON-DISCRIMINATION ACT FINAL REGULATIONS

Law Prohibits Using Genetic Information to Make Employment Decisions

The U.S. Equal Employment Opportunity Commission (EEOC) today issued final regulations implementing the employment provisions (Title II) of the Genetic Information Non-Discrimination Act of 2008 (GINA).  GINA prohibits use of genetic information to make decisions about health insurance and employment, and restricts the acquisition and disclosure of genetic information.  Title II of GINA represents the first legislative expansion of the EEOC’s jurisdiction since the Americans with Disabilities Act of 1990.

The regulations were approved by a unanimous vote of the Commission, and include clarifications and refinements made in response to comments received during the notice and comment period.  “The final regulations implementing GINA reflect the concerted effort by all Commissioners to ensure that workers, job applicants and employers will have clear guidance concerning the implementation of this new law.  These regulations are also a testimony to the tireless work of the late Paul Steven Miller, who was a Commissioner of the EEOC and a leader in the movement to protect individuals against discrimination based on family medical history or genetic information for many years,” said EEOC Chair Jacqueline A. Berrien.   The GINA regulations are the first issued by the EEOC since Chair Berrien and Commissioners Chai R. Feldblum and Victoria A. Lipnic joined Commissioners Stuart J. Ishimaru and Constance Barker on the Commission in April, 2010.

Congress enacted GINA with strong bipartisan support in 2008, in response to concerns that patients would decline to take advantage of the increasing availability of genetic testing out of concern that they could lose their jobs or health insurance if such tests revealed adverse information.  Title II of GINA prohibits employment discrimination based on genetic information, and restricts the acquisition and disclosure of genetic information.  Genetic information includes information about individuals’ genetic tests and the tests of their family members; family medical history; requests for and receipt of genetic services by an individual or a family member; and genetic information about a fetus carried by an individual or family member or of an embryo legally held by the individual or family member using assisted reproductive technology.

 The final regulations provide examples of genetic tests; more fully explain GINA’s prohibition against requesting, requiring, or purchasing genetic information; provide model language employers can use when requesting medical information from employees to avoid acquiring genetic information; and describe how GINA applies to genetic information obtained via electronic media, including websites and social networking sites. 

 “I am pleased that the new Commission was able to complete the GINA regulations and make some common-sense changes based on the public record,” said EEOC Commissioner Victoria A. Lipnic.  “While fulfilling the law’s purpose to protect individuals from genetic discrimination, I believe these final regulations properly balance and reflect the needs and realities of the workplace and preserve the appropriate means for employers to offer health and wellness plans.”

The Commission has also issued two question-and-answer documents on the final GINA regulations, one of which is aimed at helping small businesses comply with the law.  Links to the regulations and to the questions-and-answers are on EEOC’s website, at http://eeoc.gov/laws/types/genetic.cfm.

The EEOC enforces federal laws prohibiting employment discrimination.  More information can be found on the EEOC’s website at www.eeoc.gov.

Fighting for Our Lives in CT: Patients with Disabilities Denied Treatment, Food and Water

From the JFA Moderator:

These cases turn my stomach.  Below is an Afficdavit given by Nancy B. Alisberg of the Connecticut Office of Protection and Advocacy in the OPA's motion to intervene in an assisted suicide suit.  She describes three cases where guardians and medical professionals decided to withhold treatment (including in one case, nutrition and hydration) from people with varying disabilities.  OPA stepped in to reinstate treatment, and those individuals have recovered and are thriving.  I know there is a lot of controversy around whether people should be allowed to end their own lives, but I can't imagine many people support the right to end someone else's life, someone who has demonstrated a desire to continue living.  I try to imagine similar circumstances if the child or patient did not have a disability, and I am convinced those decisions would have been made very differently.  Read below and judge for yourself.

Below is a retyped copy of the affidavit:

NO: HHD CV 09 5033392 S

GARY BLICK, M.D., and
RONALD N. LEVINE, M.D.
V.
OFFICE OF THE DIVISION OF CRIMINAL JUSTICE, et al.
SUPERIOR COURT
JUDICIAL DISTRICT OF HARTFORD
AT HARTFORD

APRIL 8, 2010

AFFIDAVIT OF NANCY B. ALISBERG

1.    My name is Nancy B. Alisberg.  I am over 18 years of age and I understand the obligations of an oath.

2.    I am employed by the State of Connecticut Office of Protection and Advocacy for Persons with Disabilities (“OPA”) as the Managing Attorney.  I have been employed in this capacity since March 31, 2000.  I have been a member of the Bar of the State of Connecticut in good standing since November, 1983.

3.    As the Managing Attorney, my duties include, but are not limited to, supervising staff attorneys employed by OPA and maintaining my own caseload of cases.

4.    In 2007 I represented a woman with a profound intellectual disability who lived in a group home.  She had a history of aspiration pneumonias.  Her physician decided that she would not recover from her current aspiration pneumonia without the insertion of a feeding tube.  The physician was concerned that she might not accommodate the feeding tube easily.  The physician therefore recommended that my client be starved to death by the withholding of nutrition and hydration.  Her guardian, who was her brother and lived in another part of the country, consented to the order.  The brother also signed a Do Not Resuscitate (“DNR”) order.  These orders were approved by the Department of Developmental Services (then the Department of Mental Retardation).

5.    When OPA learned of this situation, I immediately brought a motion in probate court to begin nutrition and hydration, and to remove the “DNR” order.  The court granted my motion.  The woman is now happily living in a group home and has learned to live comfortably with her feeding tube.

6.    In 2008 I represented a 15 year old boy who had a profound intellectual disability and was in the care and custody of the Department of Children and Families.  He had developed a severe yet treatable form of leukemia.  The physicians who were treating him believed that he would not understand why he would “suffer” from the side effects of the chemotherapy, and that he might lose some additional cognitive functioning from the radiation treatment.  They therefore felt he should not be treated and should be allowed to die.

7.    The physician’s position was brought to the hospital ethics panel which supported the physicians.  It was only because of the intervention of the OPA and another interested advocacy organization that DCF ordered that treatment be commenced.  This young man is now in complete remission and living in an adoptive placement.

8.    In 2009 I represented a woman who has a brain injury that was the result of a complication of a heart transplant.  The woman lived at a long term rehabilitation facility.  The treatment providers at this facility informed my client’s parents, who were her conservators, that she had reached what they believed to be her maximum level of rehabilitation.  Her parents decided that she would not want to live with her level of disability, and thus ordered that she receive only “comfort care.”  That decision sentenced her to death as it ended all routine anti-rejection treatment for her transplant.  My client expressed an unequivocal desire to live.  Her providers at the rehabilitation facility were aware of her choice yet they implemented the parents’ orders.  We were therefore required to obtain an order of the probate court in order to restart the required anti-rejection care to save her life.  She is now thriving, acquiring new skills and in a loving relationship.

9.    As the managing attorney, I have also supervised staff attorneys who have represented clients with intellectual disabilities who have had Do Not Resuscitate Orders imposed by guardians or conservators or who have been denied dialysis treatment for reasons related only to the level of their disability.  It is only because of the intervention of OPA and the probate courts that the lives of these individuals have been saved.

From Stephen Drake, Not Dead Yet (4.14.10):

First, it could be that I am just paying more attention to these things, but I am getting the feeling that these cases are on the upswing.  In just the past few years, the Protection and Advocacy offices in Illinois, Wisconsin and Pennsylvania have all had to intervene in these types of situations.  I know of at least one other state in which Protection and Advocacy has had multiple occasions to intervene in attempted treatment withdrawal or withholding based on disability discrimination.  There's no reason to believe that the problem is limited to those states...

>>> For Not Dead Yet's Full Response

Comment Below: How is it that people responsible for protecting and preserving life can openly seek to end the lives of the people they are responsible for by withholding basic treatment, food and water?  How do we defend ourselves when our lives are seen as worthless and our wishes are ignored?  I know the above stories are only  a drop in the ocean.  Share your stories below. Do you know someone whose treatment was withheld, whose voice was shut out, and whose life was devalued by medical professionals, over-burdened family members or guardians?