Homeward Bound vs. The Hissom Memorial Center

I. True Story

1. In early American society, individuals with developmental, mental/physical disabilities and elderly were cared for by the family unit. As the population of America increased and became more industrialized, society and family life became more complex because family members worked outside the home and often away from the community, so the care of individuals with disabilities became more haphazard. The numbers of homeless increased and many were abused/neglected. As a result, the need for more comprehensive program for individuals with developmental disabilities, etc. became urgent.

1. Informal groups were formed to care for large numbers of individuals with developmental disabilities, etc. These groups lacked sufficient funding and organization to adequately meet the needs of people with developmental disabilities. These groups were the beginning of institutions. The increased availability of institutions contributed to more incentive for families to place their family members and loved ones outside of the home.

2. The early history of institutions was not pretty. Individuals were chained to walls, beaten, subjected to poor hygiene and poor nutrition and were abused in ways which can hardly be imagined. The institutions were situated in the worst part of cities and in the country sides, “out of sight and out of mind.” The institution became a self-contained, self-serving and self-monitoring system. It had little or no transparency or outside oversight and many were run by directors who acted as if they owned this population. What happened in the institution stayed in the institution and outside contact/visits by families or others concerned on behalf of individuals were discouraged or not permitted at all.

3. The institutional model, disempowered families and local communities, which shifted the power to government entities which demanded full control or no control at all. If a family wanted to provide care for their own, they received little or no assistance; however, if they chose to give up their responsibility and place the individual in a government-run facility, the average cost to the taxpayers was $100,000 or more per year. Institutions resisting releasing individuals from their care because their own jobs depended on keeping them in the institution. Can you imagine you or your loved one being kept in an institution of any kind, i.e. hospital, etc. simply because someone’s job depended on it? (Pause)

a. Although there were many good people working in institutions, the system failed because it was self-contained, self-serving and self-monitoring, i.e., government as a provider in an institution was training their own people, providing their own psychological services, social services, physical therapy, etc. and those who were supposed to be watchdogs for the system were getting a paycheck from the system, which had little or no incentive to challenge the system which resulted in abuse, neglect, corruption and cover-up.

III. New Movement

1. What you are about to read is a true story. This story is about several families who wanted a better life for their children and loved ones who were residing in an institution under inhumane conditions. They challenged the State of Oklahoma in a federal lawsuit to allow individuals with developmental disabilities confined to the Hissom Memorial Center to move into the community and be allowed to participate to the fullest extent possible.

1. In 1981, several Oklahoma parents who were frustrated by the systematic neglect, abuse, unexplained death, lack of support for more community options and the heavy-handed management of the institutions came together and formed a new advocacy organization called Homeward Bound.

1. Homeward Bound’s original purpose was to provide services for children and adults with developmental disabilities in the community.

2. At that time, there were no out-of-home placements for an individual with developmental disabilities except in a state institution or one of a few nursing homes.

3. There were other places for people with mild or moderate developmental disabilities. However, all of these places excluded people with severe developmental disabilities such as the Homeward Bound parents’ children.

4. As there seemed to be few options for their children in Oklahoma, the group began to research the options other states provided for people with developmental disabilities.

9. They discovered that other states had been providing a wide array of services for people with severe developmental and physical disabilities in the community for many years, which involved the following:

• Family support (in/out-of-home respite care, cash vouchers, etc.) which empowered parents to care for their children at home.

• Children whose families were unable to care for them, even with supports, were being cared for in specialized foster care.

• For adults, there were group homes and independent types of living arrangements in the community as well as a wide range of vocational services.

5. After hearing what was possible, the group began to be hopeful that services would be provided in Oklahoma.

2. The Homeward Bound supporters worked for several years with anyone who would listen to them concerning community services.

1. They found other states providing services and using money from Title XIX which had previously been limited to the operation of institutions.

b. This was a federal program that allowed states to obtain federal funding which had previously been limited to the operation of institutions.

3. Lloyd Rader, the long-time director of Department of Human Services (DHS), stated that Oklahoma would never have such a program. (Pause)

1. The parents also inquired about the possibility of their children being served by the then newly-funded state group home program.

2. The parents were told that the program at that time was only for people with mild developmental disabilities who were employable in competitive employment.

3. The parents also explored the possibility of getting money from private foundations, but the foundations they contacted were unresponsive. They decided to wait for things to change. (Pause)

4. Things did change. Rader left. The interim director, Henry Bellmon, brought in new leadership and created a new unit to serve people with physical and mental developmental disabilities. Unfortunately, it was a case of too little, too late.

1. Several more of the Homeward Bound families experienced life changes, i.e. divorce, financial burden, difficulty, etc. that forced them to place their children at Hissom Memorial Center.
   

i. Eventually, all of the children of the Homeward Bound group ended up at Hissom.

2. As problems continued to exist in the institution, the parents of Homeward

Bound again drew upon their advocacy experience and began to advocate for change.

9. They wrote to the new state leadership and asked for help.

2. There were unexplained injuries, abuse, neglect, cover-up, lack of proper clothing, no physical or occupational therapy, school programs that only last an hour or two a day and illnesses caused by lack of sanitation.

3. The parents were assured by administrators of the institution that the problems would be corrected.

4. From what they had read and their discussions with people from other states, the parents learned that, in some states, changes in services for people with developmental disabilities had come about as result of what were called class action law suits.

5. The parents wanted to explore this possibility in case their efforts to get change in other ways didn’t work. They talked to Steve Novik of Legal Aid of Western Oklahoma about the serious difficulties their children were having at Hissom and the information they had from talking with people who worked at Hissom.

9. Novik said that he would try to find a way to represent them if it became necessary, but he recommended waiting until the new leadership that the Department of Human Services had a chance to correct the problems.

6. They waited. Parents continued to write letters asking for help for their children, but nothing happened except that their children continued to have multiple needs that weren’t being met in the institution or in the community.

5. Parents took action when a child at Hissom experienced such severe abuse and neglect that he nearly died. (Pause)

1. They went to the District Attorney, the Protection and Advocacy Agency, Office of Handicapped Concerns and the Child Abuse Hotline for help, but no one was willing or able to help.

2. The parents were referred to the Oklahoma Commission on Children and Youth – which did investigate. Their findings showed severe neglect, but the Department of Human Services did not respond to the report. (Pause)

6. In the meantime, a parent who was not a member of the original Homeward

Bound group, filed a lawsuit charging abuse and neglect of their child at Hissom.

1. The resulting investigation found that her child had been seriously injured but no one could explain how.

2. The investigation also revealed that a doctor employed at Hissom had never attended medical school. (Pause)

3. The Homeward Bound parents were told by officials that this had been an isolated incident and was not representative of the care residents received at Hissom.

i. The parents replied that they knew this was not true because their own children had experienced similar problems.

1. Tulsa media investigating the mother’s allegations checked public records and found that two of the Homeward Bound parents had filed a lawsuit against Hissom to gain access to their children’s records. (Pause)

1. The parents told the reporters about other states which did provide family support services. One Tulsa newspaper expanded their story to a series of articles titled: “Wasting Away in Oklahoma” which told the story of institutions in Oklahoma.

1. The reporters traveled to Nebraska, a state which had been at the forefront of community service development, to visit their programs and compare the Nebraska experience with that in Oklahoma.

2. The parents expected to hear a public outcry as a result of the articles, but were disappointed. At this point, they decided to formally reactivate the Homeward Bound organization – this time as an organization to develop systems of advocacy to obtain services for people with severe developmental disabilities in the community.

9. They sent a delegation of parents to Nebraska to see with their own eyes what they had read and heard about. The delegation came back convinced of the rightness of their undertaking.

2. The parents began to ask for meetings with public policymakers to try to

convince them that there were dangerous problems at Hissom and that the solution would be to provide services in the community for people with severe disabilities.

1. They met with several legislators, the head of the Department of Human Services, the head of the Developmental Disabilities Services Division and the chairman of the Oklahoma Commission for Human Services.

2. They tried to meet with the Governor, but were referred instead to a recently –formed task force on mental retardation.

9. They found that the task force apparently felt none of the urgency they felt since it was not scheduled to report for two years. (Pause).
   

9. The parents contacted state and national organizations seeking help. Oklahoma organizations were unresponsive, but national organizations provided information about ways to affect change.

a. The parents became convinced that the only way to get permanent change was to file a class action lawsuit against the state. They began to meet with law firms in Oklahoma to ask for help. (Pause)

b. They were told by everyone that a private law firm could not afford to take such a suit because of the costs involved. Legal Aid also refused to take the suit because of the costs involved.

3. In other states, the United States Justice Department had participated in investigations of institutions and class action law suits.

4. The parents contacted the Justice Department, but were told that under the administration (Reagan), the department was no longer participating in such suits.

10. The parents were referred to the Public Interest Law Center of Philadelphia (PILCOP). This law firm had handled other deinstitutionalization law suits in other states and had helped close the Penhurst institution in Pennsylvania.

1. PILCOP had received a federal grant which gave them the financial stability necessary to absorb the costs of a protracted court case.

2. PILCOP contacted Louis and Pat Bullock, two Oklahoma attorneys who had been successful in other human rights cases and asked them to join in representing the parents in Oklahoma.

10. In April of 1985, the parents formally asked PILCOP to file suit. The class action suit filed in Federal District Court by Homeward Bound, Inc. and six named plaintiffs on May 2, 1985 alleged that Hissom was a dangerous place to live.

1. Among the relief requested was that the state provide services to all plaintiffs and members of the class in the least restrictive, most integrated community setting appropriate to their needs.

b. Testimony was heard in the U.S. Federal Court in Tulsa by Honorable Judge

James Ellison. It lasted from June to December of 1986 and testimony was given by numerous witnesses, experts, advisors and other parties (Pause)

i. Not all parents of the residents in the institution agreed with the plaintiffs. About 120 parents joined as “interveners” attempting to assure that Hissom remained open.

12. On July 24, 1987, the Court issued its Findings of Fact and

Conclusions of Law and the Court Plan and Order of

Deinstitutionalization. (Closing Hissom)

a. The latter defined the members of the class, set out a comprehensive plan of community services and established a four-year timetable for placing all Hissom residents into the community.

b. On October 21, 1987, the Court entered the judgment by the judge in favor of the plaintiffs. The state filed an appeal. Later, the state’s appeal was dropped and the parties entered a Consent Decree, which was adopted by the Court on February 1, 1990.

c. A monitor was appointed to oversee the Plan of Deinstitutionalization.

(Pause)

d. The Consent Decree superseded the previous orders, including plans for

provision of community services, limited case manager’s case loads, provided a schedule for placing all class members in appropriate community settings by October 1, 1993 and targeted the discharge of all remaining residents from Hissom by October 1, 1994.

5. While the case only affected people who had lived at Hissom, it was nevertheless a significant factor in Oklahoma’s shifting emphasis away from institutions and toward independent community lifestyles for people with disabilities.

4. Conclusion

1. What is your conclusion in relation to this true story? (Pause)

2. The following is ETL’s conclusion.

1. The Hissom lawsuit was not an accident. The fact is, many cases never make it to federal court and from those who do make it, and very few go to trial. The State of Oklahoma losing the Hissom Memorial Class Action Lawsuit means the state did not live up to their constitutional responsibilities to its citizens with developmental disabilities, which is a short-coming of those who were running state programs, state affairs, etc.

2. In a democratic society, government has and will continue to play an important role.

1. The role of government should frequently be assessed, challenged, debated and ultimately decided upon by the majority of the people.

2. Government polices should empower people to provide for self/others to the extent possible as opposed to disempowering its people.
   

3. Historically, there have been instances in which government officials have lied to their citizens; participated in cover-ups, scandals, etc. in order to protect the system that was originally designed to serve its people.

1. It is crucial that we create a system that has strong checks and balances, safety net and transparency in order to hold government officials who engage in wrongdoing to greater accountability and responsibility (Pause)

2. In a democratic society, we do not always get what we deserve, we usually get what we are able/willing to stand up and struggle for. (Pause)

1. As members of society, we are morally obligated to stand up and protect the rights of ourselves and others.

2. Unfortunately, there are always some in society who cannot stand up and advocate for themselves and who cannot afford lobbyists. We are morally obligated to be a voice for those who can not advocate for themselves.

c. Short-changing the most vulnerable members of our society devalues us as Oklahomans.

REMEMBER BOX

What we do can underline or erase what we say. We are not what we say we are, but rather, we are what we do.

REMEMBER BOX

When we as a community (church, school, etc.) city and state don’t deal with systematic abuse and neglect; corruption and cover-up, it is more likely that the Federal Government will get involved, which often is intrusive and excessive

History of ETL School of Thought

I. Promoting a cause greater than ourselves

A. The History of the ETL School of Thought depicts the struggles involved in overcoming patterns of non-therapeutic attitudes and behavior in relation to treatment of individuals with developmental disabilities. Politicians, professionals in the field and many in the public at large had fixed ideas about how and where individuals with developmental disabilities should live.

1. The struggle involved helping politicians realize money is better spent where individuals with developmental disabilities can live and function as productive members of a community where there is strong transparency, checks/balances and a safety net, rather than residing in an institution (segregated environment), which is self-contained, self-serving and self-regulated.

2. Another challenge was convincing some members of a profession who felt they were the only ones qualified to work with individuals with developmental disabilities that other professionals with a different approach had something of value to offer. (Pause)

3. Another challenge was educating the community about the value of sharing their lives and community with individuals with developmental disabilities.

a. No one has an option to be born, as a result, everyone, regardless of their race, nationality, gender, ability, etc. has a right to be here. (Pause)

B. A turning point in the attitude toward individuals with developmental disabilities in Oklahoma came about as a result of the Homeward Bound law suit and subsequent historical decision by the honorable Judge James Ellison, to close the Hissom Memorial Residential Center and place the residents from Hissom in community settings.

1. As in most decisions that call for a major disruption in the status-quo, a great deal of anxiety, confusion and turmoil resulted both in the communities and with the former residents of Hissom. It became apparent that a new model for training and support needed to be developed for the people in the communities, the professionals involved and the individuals with developmental disabilities.

2. The speed with which this relocation had to take place in order to comply with the court order and an attempt by many professionals in the field to apply the same rules and type of practice that characterized their profession for years led to a great deal of confusion, disorder and despair during the first year of the relocation effort.

3. In 1989, some state and federal officials observed Masoud Moazami working hands-on with individuals and caregivers who exhibited the most challenging issues (sexuality, aggression, etc.). Due to the extraordinary success being achieved, the officials concluded that this approach should be used on a broader scale. The philosophies, approaches and techniques, etc. being used were a dramatic departure from those techniques commonly used at the time. (Pause)

4. Following encouragement from some state and federal officials, ETL Institute was established on August 1, 1993 in order to serve individuals with challenging issues who were moved into the community as a result of the Hissom Memorial Center, Homeward Bound lawsuits. The ETL program has expanded in order to serve all individuals with developmental disabilities and their families.

5. There have been many hard-fought battles in bringing ETL services to individuals with developmental disabilities. The status quo is never easy to revise since many people want to do things as they have always been done and fear change will bring about loss of control.

   a. A closed system (self-contained/self-serving/self-monitoring) resists transparency, checks and balances, or a safety net to ensure wrongdoing such as fraud, abuse, neglect, misappropriation of funds, cover-up, etc. would not be exposed. (Pause)
   
   
6. There is an abundance of empirical evidence to support the effectiveness of ETL classroom training, ETL emergency support and ETL direct service with persons with developmental disabilities. (Pause)
7. 7. ETL has faced being ignored, ridiculed, dehumanized, and falsely accused and deliberate sabotage while attempting to be a team player in bringing services and support to individuals with developmental disabilities, their families, staff, etc. in the highest quality and most cost-effective way.

8. In spite of all the hard work and sacrifice on the part of many people who contributed to changing the system, there are some who would destroy what has been gained in order to go back to traditional ways of treating individuals with developmental disabilities and billing and eliminate checks and balances, safety net, transparency etc. in relation to abuse, neglect, corruption or cover-up.

II. ETL Contribution

A. “ETL assisted the state of Oklahoma in successfully ending the lawsuit.”

- Jim Nicholson, Administrator of DDSD

B. ETL contributed a smooth transition for individuals with developmental disabilities to go from the institution into the community.

C. ETL developed and provided a uniform method of classroom training which enhanced the skills and knowledge for those who provide care for individuals with developmental disabilities.

D. ETL developed and provided a statewide direct service program which involves hand-on teaching and learning with the individual and their caregiver at home, in the community, in the work setting, etc.

E. ETL developed and provided a statewide 24/7 Emergency Support for the individual and their caregivers to assist with a crisis.

F. ETL brought transparency and checks/balances in billing by having the individual/caregiver sign the direct service form, showing arrival/departure time and description of service provided.

1. This transparency in billing challenged the traditional form of billing which involved overbilling, billing for services not provided, double-billing, etc.

G. To ensure the consumers get the most for their money, ETL shifted the direction of the professional service from billing paperwork, phone calls, meetings, etc. to more hands-on teaching and learning with the individual and their caregiver at a time and place suitable for their needs, seven days a week.

H. To control the cost of service, ETL is the first and only professional service to provide courtesy visits.

1. After the units run out of the individual’s plan of care, ETL continues to provide courtesy visits as needed until the new plan of care.

2. ETL courtesy visits saved the state and taxpayers millions of dollars, especially during the lawsuit by providing services free of charge while other professionals would reach their cap (federal/state match), the use the state fund.

I. To ensure that the most qualified and ethical professionals serve the consumer, ETL voluntarily developed a certification process that involves a minimum of a 6-9 month period.

1. Every ETL teacher is required to successfully complete this process regardless of degree, status or title in order to ensure we are providing the highest quality of service to individual with developmental disabilities.

2. ETL Institute is not compensated for the certification process.

III. ETL ACHIEVEMENTS

A. Recognized as a World Class Program by the Governors’ Conference for Developmental Disabilities. (Jerry Provencal, CEO, MORC and Advocate, 1995).

B. Recognized as for setting the highest standard in the nation by the United States Department of Justice (Indiana Governors’ Conference, 2002)

C. Nominated for Professional Advocate of the Year. (TARC, 2003)

D. “Admired for their reputation, integrity and concern for use of taxpayers’ money.” (John Selph, President and CEO, Volunteers of America)

E. “ETL teachers are a valuable asset to the individual as well as the agency.” (Provider Agency, 2004)

F. “…providing a program based on ETL principles, we have experienced a 73% decrease in usage of physical restraint and behavioral incidents.” (Provider Agency, 1992)

G. “Unsung hero and best of Oklahoma.” (The panel that oversaw the Hissom Lawsuit).

REMEMBER BOX

We never know how tall we are until we choose to stand for something we believe; we become tall when we stand to promote a cause greater than ourselves.

REMEMBER BOX

The difference between good and bad is the choices we make.

REMEMBER BOX

“First they ignore you, then they laugh at you, then they fight you, then you win.” Gandhi