Testimony

Testimony Given to Joint Finance Committee
February 28, 2008
Carlyle F.H. Hooff, Executive Director of National Alliance on Mental
Illness - Delaware

My name is Carlyle Hooff.  I am the Executive Director of the National Alliance on Mental Illness in Delaware.   I am new to NAMI - DE and not new to Delaware.  I live down state and have been a weekender all my life until recently, when I moved to Sussex County.

Senator Cook and Representative Oberle and members of the Joint Finance Committee, thank you for scheduling a public hearing as a part of the process for finalizing the State Budget for Fiscal Year 2009.

This body has heard testimony for a month and a half from state agencies, community service providers and concerned citizens, ranging from annual progress reports to needs for funding for particular projects.   The people who have populated Legislative Hall are all partners in a better, more livable Delaware. We all realize these are fiscally tight times and that maintaining current funding with a sprinkling of new initiatives is responsible government.  So I, as the representative of NAMI-DE, come before you with a message of support for our government but also asking for a long term strategy for the mental health services in Delaware.

NAMI – DE is celebrating its 25th Anniversary this year.  Over the last 25 years, Board Members, Executive Directors and families of the NAMI – DE community have testified before this body and other bodies, to raise awareness of mental illness and to ask the elected officials to address issues that affect the safety and security of persons living with mental illness and their family members.  

But this is not enough, more and more people are being diagnosed with a mental illness, health insurance does not cover long term needs including medications, therapy, or hospitalization and supplementary security income does not cover the costs of rent without federal subsidies.  

The new articles, the Governor’s Task Force and House Committee brought to the forefront the sever and continuing issues of the mental health delivery system from long term hospitalization; group homes; independent living; case management to community mental health services.   The issues that have been raised and continue to be raised need strategic solutions which require a commitment from the highest level to the community service providers who are daily serving the mentally ill population and their families.

NAMI- DE has written a statement concerning DPC as well as the mental health service delivery system which is in our current newsletter and on our website.  I will leave a copy for each of you today but I would like to paraphrase the article as part of our testimony today:

• We encourage the Governor and the Legislature to consider and reconcile the recommendations of both the House Committee and the Governor’s Task Force. An implementation plan, with a realistic budget, needs to be presented to the Joint Finance Committee, ensuring that the plan becomes a permanent part of the state budget. There must be an understanding, particularly when the new administration is sworn in, that funds have been and will be earmarked for necessary changes in Delaware’s mental health system.

• Make a long term, multi-year financial commitment to address the issues raised in the recent reports for community service providers, DPC and State Agencies.

• Address the “funding catch up issue” with community mental health providers. The increase in the State community budget from year to year has been inadequate given the much greater increases in the cost of treatment, rates of identification of persons with mental illness,  reducing the patient population at DPC and using community based services as a cost saving measure for DPC.   Community service providers cannot continue to deliver adequate services in yesterdays dollars.

• Maintain an adequate, continuous, source of funding for persons who require hospitalization but are uninsured. We have been informed that DSAMH will run out of money at the end of March 2008 for persons who are uninsured – both for voluntary and involuntary hospitalization.  Persons who request voluntary hospitalization languish in the Psychiatric ER because DPC no longer accepts them.  The whole issue of access to inpatient care is a crisis in mental health care in Delaware; this is true both in the adult and the child mental health system.
  
• The lack of funds for the uninsured has multiple downstream effects.  When much needed inpatient care is denied, families bear the burden.  And the patient and society are put in danger. These are patients most likely to be a danger to themselves and others.  Remember the stories learned from the Virginia Tech Tragedy and other tragedies in NYC.  We do not want a tragedy in Delaware that could have been diverted with an adequate source of funding for hospitalizations either in DPC or the community psychiatric hospitals.
  
• The very basis of State responsibility for providing acute care for the uninsured is now in jeopardy in Delaware. We request that the Joint Finance Committee ask Department of Substance Abuse and Mental Health questions about this looming crisis and ask for a more accurate budgetary request for the next year so we are not headed into March 2009 with no funding for the uninsured patients needing acute psychiatric care.

• A transformation in service delivery is required.  At the heart of that transformation must be a focus on the needs of consumers and families. This will require changes both at DPC and with the broader system of care.

• This is a time for the elected officials, appointed officials and state agencies to recognize that there are systemic problems at DPC and the mental health delivery system in Delaware and to make a commitment to effecting a true change. NAMI-Delaware is eager to play a vital role as Delaware embarks on a journey to turn DPC into a high-quality, medically based hospital, partnered with a highly effective recovery-based community treatment component that embraces a continuum of care.

Please know and understand  that NAMI – DE will continue to speak out for the most vulnerable of populations who have been and continue to be underserved.  Please help us help them.

NEWSLETTER ARTICLE – 2/08

DPC and Beyond

NAMI-Delaware acknowledges that there have been serious problems at Delaware Psychiatric Center (DPC).  The recent series of articles in the News Journal has finally brought to the attention of the general public the need for a fundamental change in how mental health services are delivered, not just at DPC but throughout the broad system within the Division of Substance Abuse and Mental Health.

The News Journal articles have spurred the launching of a number of investigations, some of which are still underway. We recognize in particular the serious work of the Governor’s Task Force on DPC and the legislative investigative committee chaired by Rep. Cathcart and praise both bodies for their dedication and for the decisiveness contained in their final reports. NAMI-Delaware participated in the process early and presented testimony to both study groups, along with thoughtful recommendations for improving care at DPC. We are pleased that many of them are incorporated in the recommendations of the study groups. [Our testimony is available on the NAMI-DE website, www.namide.org.]

NAMI-Delaware recognizes that the shortcomings at DPC fall into several categories, including: personnel-related issues, including interdisciplinary strife; issues of abuse and neglect of patients; overuse of some undesirable treatment approaches, including seclusion and restraints; a lack of clear evidence of quality clinical care; failure of leadership at various levels, from the top of the organization to the unit level of care; questions around transparency and accountability of people directly responsible for care.

In addition,  NAMI-Delaware continues to express its concern that all patients who need and seek hospital treatment, including those willing to be admitted voluntarily, are not denied admission to DPC (or elsewhere)  because of overzealous misinterpretation of the commitment statute. [NAMI-DE’s Position Paper on Involuntary/Court-ordered Commitment is also available on the website.]

These issues require long-term solutions. A transformation in service delivery is required.  At the heart of that transformation must be a focus on the needs of consumers and families. This will require changes both at DPC and with the broader system of care. We encourage the governor and the Legislature to consider and reconcile the recommendations of both the House committee and the Governor’s Task Force. An implementation plan, with a realistic budget, needs to be presented to the Joint Finance Committee, ensuring that the plan becomes a permanent part of the state budget. There must be an understanding, particularly when the new administration is sworn in, that funds have been and will be earmarked for necessary changes in Delaware’s mental health system.

 This is a time for the elected officials, appointed officials and state agencies to recognize that there are systemic problems at DPC and the mental health delivery system in Delaware and to make a commitment to effecting a true change. NAMI-Delaware is eager to play a vital role as Delaware embarks on a journey to turn DPC into a high-quality, medically based hospital, partnered with a highly effective recovery-based community treatment component that embraces a continuum of care.

No more falling through the gaps. No more trying to piece together effective treatment in a disjointed system. Our goal is for Delaware to seize this opportunity to become a premier state when it comes to the entire spectrum of services that the mentally ill not only need but deserve. As it has since it was founded in 1983,  NAMI-Delaware will continue to “support, educate and advocate, ‘til there’s a cure” for serious and persistent mental illness.  

November 16, 2007

Testimony to Governor’s DPC Task Force

Dorothy Patterson, Past Chair, NAMI-DE/DPC Monitoring Program

The monitoring program at DPC (then Delaware State Hospital) started in 1987 with the approval of the Division Director, who asked the Hospital Director to put the program in place. The program was designed to improve the quality of life for patients and staff. Monitors are volunteers who are recruited by NAMI, who receive training and visit an assigned unit in pairs, unannounced, at least once a month over a 6-month period. A report is generated by the monitors, given to Performance Improvement and then distributed by them to the Hospital Director and those departments which are responsible for corrective action. DPC responses to deficiencies are to be reported back to NAMI within 10 days. Responses have been lax and some issues date back to 2006.

I am hoping that the safety issues reported September 10 on Sussex 2, “Pod B emergency exit door is locked and will not open”,and September 26, “K2 staff wants exit door lights checked to be assured they are on” have indeed been corrected. Performance Improvement monthly reports showing corrective action to deficiencies noted by the monitors have not yet been sent to NAMI for September and October. Phone calls by NAMI regarding this matter were not returned. However, yesterday an Email was received noting that a person will be updating the reports this weekend. No explanation for the delay!

NAMI’s monitoring has continued under nine hospital directors over 20 years and we have never before experienced such a lack of cooperation in this program.

I know you have heard from Mr. Bundek (Director of Facility Operations) about the infrastructure problems on the Carvel unit. Lack of warm water and low water pressure has been noted on the monitoring reports for years. We know that to correct these problems would be a large expenditure. The monitors and family members also know it’s a quality of life issue and the patients deserve better.

.As monitoring chair I participated in the orientation of new hires, telling them about the monitoring program and making reference to my personal experience, living with a person with mental illness. I was joined by an ex-patient who spoke of his experiences during his stay at DPC. I don’t know if this is continuing,

For years I served on the Governing Body for the Hospital. During that time, we regularly reviewed PM-46 Reports (with names redacted). Senior staff representing hospital disciplines regularly attended the meetings. After Mr. Meconi became Secretary, the Governing body became an Advisory Committee to the Governor’s Advisory Council to DSAMH. In many respects, it seems to have lost its effectiveness as an independent voice. The Committee did pass a motion and refer it to the Governor’s Advisory Council expressing its grave concern regarding the hospital’s inability to terminate employees who have been placed on the Adult Abuse Register as a result of substantiated abuse. The committee no longer receives PM46 reports and staff attends meetings only when requested.

At one of the Task Force Subcommittee meetings that I attended, Division Director Henry stated that there are 25 patients ready to leave DPC for the community. I question whether they are ready for discharge to the community, where quality care for many people living there is less than desirable.

The first group of patients who left DPC as a group several years ago was successful, in my opinion, in making the transition because there was transitional housing on campus where they learned to fix their lunch in the kitchen, clean the rooms, and most importantly, they were away from the institutional setting. The unit from which these patients came was K-2, an unlocked pod. Peers from the community came to DPC to talk with them about life in the community, answer their questions and allay their fears. After K1 was closed and patients from that unit came on to K2, it became a locked unit again.

In her testimony to the Task Force, Ms. Henry several times stated that the safety of the patients moving into the community from DPC was her main concern. As NAMI owns

several houses in the community for persons with mental illness, I would say that I am also concerned for the safety of the neighbors. We would not want to undo all the positive things that have been accomplished in the community. I would want to know how the patients are being made “community ready” before I would count on further downsizing of DPC in the immediate future.

November 16, 2007

Testimony to Governor’s DPC Task Force

Richard Patterson, NAMI-Delaware

My name is Richard Patterson. My wife Dorothy and I have been members of NAMI-Delaware since it was founded in 1983. Until we moved to Pennsylvania last year I served as an appointed member of the Governor’s Advisory Council to DSAMH and also as an appointed member to the Governor’s Commission on Community-Based Alternatives for Persons with Disabilities. I continue to be a member of NAMI-DE’s Board of Directors. Our 50 year-old son, Scott, has been living with schizophrenia since he was a teenager. He is a client of Delaware’s Mental Health system.

Back in August , Jill Shute, as spokesperson for the Board of Directors of NAMI-Delaware, testified before Representative Cathcart’s Legislature Investigative Committee . (I believe that testimony has been shared with the Task Force.) In her testimony she enumerated several concerns that were expressed by NAMI’s Board about the DPC situation. Three months later, the Board has reaffirmed those concerns and the eleven specific recommendations proposed to address them. We are pleased that this Task Force has begun to consider some of these recommendations.

1. Concern for the safety and well-being of the patients at DPC.
   

We fully endorse the recommendations regarding patient abuse in the report presented to this Task Force on behalf of Disabilities Law Project by Ms. Eliza Hurst. In particular, we encourage your acceptance of recommended improvements in the use of seclusion and restraints, including developing a plan that eventually eliminates the practice. It is disheartening to learn from the DLP report that in recent years, after policy changes were made and extensive training in de-escalation techniques was given to nurses and attendants, the number of seclusions and restraints has actually increased.

Furthermore, we share DLP’s concern that independent reviews of PM-46 reports of abuse and neglect have been “diluted over the years” and urge that stakeholders, including family members, again be included in the process.

2. Concern for a healthy living and working environment
   

We support the replacement of the existing hospital facility. There are many problems associated with the age of DPC that can no longer be ignored. Recovery is not enhanced in the dreary setting; it is bad for patients and staff. Delays in repair or replacement in face of escalation of costs is not wise and this is endangering accreditation of the hospital. (Others at this meeting and at next Tuesday’s Meeting of Task Group 4 will specifically address the need for a new hospital.).

The ultimate size and configuration and appointments of the new facility need to be reexamined.There is always an irreducible number of difficult to treat patients who are best served in an institutional setting. Also, there are still persons with serious mental illness who are denied treatment because of current restrictive commitment laws. NAMI-Delaware has developed a policy position addressing involuntary/court-ordered commitment in Delaware and recommending legislative changes. Copies will be made available to the Task Force members.

We applaud the fact that surveillance cameras are being installed within DPC and in the parking lots in an effort to deter vandalism. We continue to urge that harassment of employees must stop and that employees found to be guilty of abuse be either terminated, or at least removed from direct contact with patients.

3. Concern for Quality Care from a Medically Focused Treatment Plan
   

The many vacancies in physician and nursing positions need to be filled,

so that staff members are not overloaded with multiple responsibilities and they can focus on providing quality care to their patients.

The organizational structure, especially the lines of responsibility, so important in a team-based environment, needs to be clarified so that someone is identified who can make decisions, when the buck stops.

Decisions on medications should be based on efficacy and safety, not cost.

Continuity of care should be provided for persons with mental illness as they transition between hospitalization and community living.

In the context of all the (justifiable) attention being paid to DPC, it should be remembered that most of the persons in Delaware with mental illness live outside the hospital. With proper, effective support services in the community, recovery is possible. Unfortunately, dollars and programs have not kept pace with the increasing need for these services and with discharges from hospitals. Community services are being curtailed, contracted providers are being stretched beyond their limits to deliver services, oversight of service delivery is minimal and ineffective.

NAMI-Delaware urges that the Task Force extend its search for “Opportunities for Improvement” in the state’s mental health system beyond DPC, into the community.

We stand ready to partner with DSAMH and other entities in providing a quality system that serves this vulnerable population.

Thank you for your diligence in this important and challenging undertaking. We look forward to your recommendations and more importantly, to their acceptance and implementation.

 

Testimony for August 21, 2007

Representative Cathcart and members of this investigative committee:

Thank you for valuing the lives of Delawareans who suffer from a serious mental illness.

My name is Jill Shute, Vice-President of the Board of Directors of NAMI-DE. In 1983 my husband, Simon, and I founded the New Castle County Alliance for the Mentally Ill which has grown to be a state-wide advocacy agency now known as NAMI-DE; an affiliate of the National Alliance on Mental Illness (NAMI). NAMI-DE’s mission is to support, educate and advocate until there is a cure for serious mental illness. Sine 1983, NAMI-DE members have served the state on numerous committees and the Governor’s Advisory Council, the DPC Advisory Committee and the now defunct DSH Governing Body.

As a NAMI support leader for the last twenty-four years I have heard hundreds of stories from families whose loved ones receive care from the state mental health system. Many families tell of the caring staff at DPC who provide quality care, while other families have tragic stories of unmet needs in Delaware’s fractured mental health delivery system. Our personal story includes accolades for the caring nurses and doctors at DSH who not only effectively treated our son’s schizophrenia but also saved his life by recognizing the symptoms of a bleeding ulcer; symptoms Steve was unable to feel due to his schizophrenia. Steve underwent surgery at the Wilmington Hospital and received excellent post-operative care at DSH. Several years later Steve was discharged to the community mental health system with fond memories of the years he spent at the state hospital.

NAMI-DE’s Monitoring Program

In1987, under the leadership of volunteer Dottie Patterson, NAMI-DE developed an alliance with the Division to provide an on-going monitoring program at the state hospital. This monitoring program is designed to:

• improve the physical conditions and quality of life at DPC

• improve the relationship between staff and family members and

• utilize documented findings for advocacy

NAMI-DE’s monitoring program has seen many accomplishments over the years, but we want to make it very clear that it does not provide oversight of treatment plans or patient care at DPC. We believe it is significant that during the twenty years of NAMI-DE’s monitoring, the state hospital has had eleven different directors, several of whom were driven out or terminated because they dared to advocate for quality care.

Although NAMI-DE is in no position to evaluate the current allegations surrounding care at DPC, we recognize that these allegations are sadly reminiscent of ones made in 1999 when Dr. Springer submitted a list of recommended improvements. Although the hospital administration has acknowledged these recommendations to be sound, the improvements have yet to be implemented at DPC. Delawareans with mental illness and those who serve them deserve better than this.

NAMI-DE’s Concerns

1. The well-being and safety of patients at DPC.
   

Delawareans with mental illness deserve to receive their medical treatment free from physical and verbal abuse and humiliation. The patients at DPC are some of Delaware’s most vulnerable, misunderstood citizens. When they are admitted to DPC they are highly symptomatic and easily victimized, and are deserving of compassionate care and medically appropriate intervention. It is unconscionable that patients are being harmed while seeking care in a hospital.

NAMI-DE is also deeply concerned that restraints are still being used with apparent frequency at DPC. In 2000 federal legislation restricted the use of restraints and in 2004 the medical director of DSAMH implemented an initiative to eliminate the use of restraints because others methods of de-escalating a patient are more effective and humane. NAMI-DE joins you in declaring that patients must be treated with dignity and respect.

2. A Healthy Living and Working Environment
   

NAMI-DE acknowledges that the age of the DPC building precludes providing the highest quality environment, and we applaud Governor Minner for requesting a new building designed for the delivery of quality care. However, until that building exists, maintenance at DPC cannot continue to be “deferred”. NAMI-DE asks for repairs and upgrades to be made promptly at DPC.

The harassment of employees must stop. Most caregivers at DPC are compassionate, hardworking and capable. They deserve a safe place to work. NAMI-DE asks that the state begin this process by firing those who harass and abuse and install surveillance cameras on the campus.

3. Quality Care from a Medically Focused Treatment Plan
   

More than anything, DPC needs an experienced psychiatrist as its Medical Director whose sole responsibility is overseeing the medical care at DPC including a voice and vote in the administrative process. It is imperative that this doctor be given the freedom to advocate for quality care without the fear of retaliation or job loss.

Doctors at DPC must not be laden with so many responsibilities that quality of care declines. These caring doctors become frustrated by not being able to implement best practices.

There needs to be better screening of staff hired at DPC.

Non-medical staff at DPC need better training so they can learn how to provide compassionate, quality care to those in their charge. This training is absolutely essential for prospective employees who will provide direct care to patients. Years ago NAMI-DE assisted with this training and is very eager to be invited to participate once again.

Patients at DPC deserve access to the best medications available. Decisions on medicines should be based on efficacy and safety; not on cost. ( Ex: Valproic acid should not be substituted for Depakote ER )

DPC needs to provide a wide array of appropriate therapies for its patients, focusing on effective management of symptoms and preparedness for community living.

Delawareans with a mental illness must have easy access to hospitalization as needed, with an emphasis on continuity of care as they transition between hospitalizations and community living.

Patients must never be discharged to a shelter, the street or a family who is unable to provide the care required. Nor is it acceptable to discharge a patient into a community mental health system that has as many problems as DPC .

Our son Steve was a victim of just such a discharge. A decade after his first bout with bleeding ulcers which was handled so wonderfully by the state hospital staff, Steve was in a community placement and his bleeding ulcers returned. Despite our repeated attempts to convince Steve’s community mental health provider that Steve needed his family involved in his care and that he needed greater medical oversight, our requests and his symptoms went largely unheeded. In February 2006, without our ever being notified, Steve had major abdominal surgery, was discharged from a local hospital on a Friday afternoon and was dropped off at his house by his caseworker with absolutely no oversight or attention given him over the weekend. That Monday night we received a call from Steve’s housemate telling us that he had called 911 because Steve was so weak. It was only then that we learned of Steve’s surgery. Steve bled to death internally that night without his provider agency even being aware of his distress. We called the provider that morning to inform them of Steve’s death. Such neglect should never happen. That is our painful story. NAMI-DE urges you to not stop this investigation at the walls of DPC, but to move out into the community to assure that adequate staffing and quality care are provided there as well.

NAMI-DE’s Recommendations

• Fully investigate past and present allegations. It appears the current investigative process is broken and needs a comprehensive restructuring.
  

• Reinstate the policy of outside oversight of PM46 reports. NAMI-DE members once served on such an oversight committee and would be eager to do so again. NAMI-DE recommends that all investigatory arms be removed from within DHSS to another department under a different cabinet secretary in order to make them truly independent.
  

• Review incidents which resulted in three arrests but were found to be without merit when previously investigated by DPC. It is crucial that DPC understand and correct the process which led to this egregious oversight.
  

• Take an in-depth look at the Admissions Unit (K-3). Special attention must be paid to the serious issues concerning this unit. K-3 is the first point of contact for patients and their families when they are most in need. Therefore, K-3 must be reformed to provide the ultimate safety net for these patients with a focus on medical best practices, compassion and safety. K-3 was cited in issues identified in 1999 and again in 2007.
  

• Recognize that other units at DPC are in even worse condition than K-3.
  

• Revisit all the recommendations made by Dr. David Springer in 1999, and endorsed by the Third Circuit Court of Appeals.
  

• Revisit the Joint Sunset Committee’s findings.
  

• Bring the policy of use of restraints and seclusion into compliance with federal law and common decency.
  

• Structure DPC to be a medical facility implementing state-of-the-art best practices. Hire a Medical Director for DPC who has a reputation for running a patient-centered state hospital.
  

• Create a branch of DSAMH that oversees continuity of care as patients move between hospitalizations and community living. The Eligibility and Enrollment Unit must have the Medical Director of DSAMH overseeing all their clinical recommendations. This should never be done by a non-clinician.
  

• Bring DSAMH into compliance with JCAHO and CMS standards by establishing two separate Medical Director positions. One Medical Director would serve at DPC and the other at DSAMH overseeing community and hospital care across the spectrum.
  

The families of NAMI-DE know better than anyone the pain of watching a loved one suffer with the symptoms of a serious mental illness. Yes, the ill person is sometimes problematic, but all the more reason for the care received to be compassionate and state-of-the-art. We urge the politicians and administrators in charge of mental health services to develop open, positive alliances with agencies such as NAMI-DE who want to help this state provide the best mental health services in the country. Our fellow Delawareans deserve nothing less than our best. A society has an obligation to care for those who cannot care for themselves.

NAMI-DE thanks all of you who have picked up the gauntlet and chosen to strive to create a premiere mental health system in Delaware. We stand by ready to help.