Winter 2011, Issue 1

We would like to take a moment to honor the memory of our dear friend and colleague,Betty Patterson, who passed away on Thanksgiving Day 2010. Betty had been a dedicated Council Member since her appointment in 2000. She was a strong advocate in the areas of employment, health law, and multicultural outreach. Her dedication, passion, and humor will be missed.

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In 2007, the Council enacted new policies for term limits that impact both Council Membership and service in leadership roles on the Council. As we move in to 2011, the impact of these policies is being felt through the Council, particularly in terms of people serving as Chairs of the various Committees of the Council and on the Executive Committee of the Council.

As a part of these changes, Florence Reed ended her term as Chairperson of the Council’s Advocacy Committee in December of 2010. Florence will continue her service and has just been re-appointed to an additional two year term as the Vice Chairperson of the Council. She will continue to share her knowledge and commitment in such areas as Grassroots Advocacy, Multicultural Outreach, Person Driven Services and Stigma. Dara DeRoiste was elected to serve as the new Chairperson of the Advocacy Committee beginning in January 2011.

At the same time, Bill Schultz ended his term as Chairperson of the Council’s Inclusion Committee. He will carry on his service to the Council through the remainder of his regular appointment, and continue to share his expertise in areas such as Stigma, the Council’s Communications Work and Faith Community inclusion. Kelly Ann Johnson has been elected to serve as the new Chairperson of the Inclusion Committee.

In the fall of 2010, Katrine Erie resigned her appointment to the Council in order to pursue other commitments. Katrine has also had a long and dedicated career with the Council. Appointed to the Council in 2000, Katrine has served as the Chairperson of the Quality Committee, on the long-standing Grassroots Advocacy Grants Committee, and has a long commitment to Leadership Development, Grassroots Advocacy, and insuring Voting Rights for people with disabilities. Amy High has been elected to serve as the new Chairperson of the Advocacy Committee.

As the new Chairs of these three standing committees, they will join Jeff Parker, Florence Reed, Nancy Richey, and Jane Mitchell on the Executive Committee of the Council. We would also like to offer our thanks for long and dedicated service to John Osenbach who completed his term on Council on December 31, 2010. John served as a parent representative on Council and has worked in the areas of Education and Evaluation. John has served the Council with dedication, keen insight, and commitment to insuring that young people with disabilities can make their voices heard.

Finally, best wishes to former Council staff member Kevin Burrell as he moves to a new role with the Bureau of Autism. Kevin worked with the Council for the past five years and staffed committee work and grant efforts in the areas of Advocacy and Multi-Cultural Outreach. We wish his all the best as he continues to serve Pennsylvania citizens with disabilities and their families.

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The process of writing the Council’s State Plan for 2012 through 2016 has lasted over two years, as many retreats, innumerable planning meetings, round tables, and hours of detailed analysis and thought were put into it.

We started with what the feds call a “comprehensive review and analysis” in which we looked at the current state of services and communities in PA, heard from the public and other important stakeholders, and tried to work out where there was the greatest long-term need for our unique capacities and interventions. Then we looked at the work we had done over the last fifteen years, using an analysis tool called the Route to Success, which we had developed with the Human Services Research Institute in MA. Using the matrices that are part of this technique, we identified unfinished work; work that could be taken to a higher level, and work that was at a dead end. We didn’t want to lose sight of goals we had set for ourselves in the past and were within reach of achieving, but nor did we want to perseverate in trying to do things that were beyond our reach or capacity. Finally, we reviewed the plans from other states to identify ideas which resonated with the types of things we wanted to do.

Eventually, we started to identify things we could do that built on our past successes and exemplified the new approaches we wanted to take. We refined and modified these goals at meetings and round tables and discussions in between, using a “living document” to keep track of our thoughts and dreams. Finally, we arrived at a list of around thirty ideas which we thought were in keeping with our values, enhanced our previous work, built on our unique skills and capacities, and made a long-term contribution to the public policies, social systems and cultures surrounding Pennsylvanians with disabilities.

We took these ideas out to the public on a “listening tour” and used the feedback to modify some and add others. The final list was voted on by the Council at a three-day meeting which also worked on restructuring the Council to meet the needs of the new plan.

What we have are some realistic goals that do not forget the past, but they scope out a new future, based realistically on our knowledge of what we can and can’t do. They also focus on our commitment to changing generic systems and never for one moment falling into the trap of seeing people with disabilities as broken, needing fixing, or anything other than a natural part of the human condition.

We hope you will be as excited as we are by our new plan. An RFP book outlining our objectives will be issued in the fall of 2011.

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Zetta Murphy was invited to serve on a Committee of the Pennsylvania Developmental Disabilities Council in 1992 and was appointed as a Member of Council in 1993. Although her mother was from South Carolina and her father from Kentucky, Zetta was born and raised in the Southside area of Pittsburgh with her six brothers and four sisters.

Zetta attended the Western Pennsylvania School for Blind Children where she thrived on the many opportunities the school offers children. Zetta then spent three years as a student at Carlow University where she majored in speech pathology and audiology. After that, she returned to the Western Pennsylvania School for Blind Children as a teacher’s aide for four years; a job that she thoroughly enjoyed.

When she is not working for Council, Zetta enjoys listening to music, especially international music, reading magazines, and listening to audio books. She is very active in her church and enjoys attending plays and concerts with her friends, as well singing herself. Zetta is still a very active volunteer in the deaf/blind community and also volunteers on various mental health committees and advocacy boards.

In her life, Zetta has been most influenced by her mother who helped shape her positive attitude when she was still very young. Her mother was her biggest advocate and encouraged Zetta to stay positive.

In her 18 years as a Member of Council, Zetta Murphy feels that she has learned many things that she would not have known otherwise, especially regarding disability rights laws. Currently, she is the chairperson of the Multicultural Outreach Committee and serves on the Inclusion Committee and the Publications Committee. Zetta also feels that she has been able to contribute to others during her time on Council, but that getting to know her fellow Council Members has been her biggest pleasure.

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The purpose of the Measuring Outcomes for Children project was “To develop and demonstrate the effectiveness of an instrument designed to measure life outcomes of children with disabilities being served by multiple child serving systems” (Pennsylvania Developmental Disabilities Council, 2008 RFP) that included indicators for measuring outcomes consistent with the intent of the Everyday Kids, Everyday Lives themes.

The Everyday Kids, Everyday Lives: A Vision for Pennsylvania’s Children was an initiative of the Pennsylvania Developmental Disabilities Council that resulted in the following vision statement: All kids should live in loving families and welcoming communities. The vision also included 10 themes for actualizing this vision, which was stated as: Loving families and welcoming communities include love and relationships, fun, growth, learning, resources, acceptance, competence, spirituality, health, and safety. The first outcome for this Measuring Outcomes for Young Children and Their Families project was to develop a valid and reliable scale that included indicators for the 10 themes which parents, professionals, and other concerned citizens identified as important for families and their children. The second outcome was to use the scale to assess the state of community, family, and child quality of life in families with young children.

It is necessary that the process of developing a valid and reliable scale go through a number of steps. This project went through four distinct steps to get from over 400 potential scale items to a final scale with 54 items in six subscales. It is also important to have input from a large number of people, so many individuals across Pennsylvania were involved in this project.

The first step was to identify a pool of potential indicators that parents and professionals thought were examples of behavior and life circumstances consistent with the intent of the Everyday Kids, Everyday Lives themes. In this step, 264 parents and professionals from 34 of the 67 Pennsylvania counties provided more than 3,000 responses to 80 open-ended questions. These responses were analyzed to identify just over 400 potential scale items. The items were classified into six categories: Community and Social Supports, Parent and Family Resources, Professional Help-Giver Practices, Child Learning Opportunities, Child and Adult Relationships, and Child Outcomes. When the redundant responses were eliminated, there were 180 items.

The second step was to have parents, professionals, and other concerned citizens identify which of the 180 indicators were most important for measuring community, family, and parent and child quality of life. Through a survey, 228 people from 53 of the 67 Pennsylvania counties indicated which of 30 indicators in each of the six categories of outcomes they thought were most important. The 15 indicators judged either very important or extremely important in each of the six categories were selected as the items which were then subjected to social validity, reliability, and scale validity analyses in the next steps of the project.

The third step involved was a field-test study of the indicators in different kinds of programs serving young children either with or without disabilities or both throughout Pennsylvania. There were 62 parents and professionals (administrators and practitioners) from 13 programs that participated in the field test. The programs included early intervention, preschool special education, Early Head Start, Head Start, preschool, and family support programs serving children with developmental disabilities, mental health conditions, medical conditions, developmental delays, and those at-risk for biological or environmental factors. The field-test participants were first interviewed about the content and intent of the scale indicators and then were asked to assess the social validity of the items in terms of their clarity, importance, understandability, and relevance.

The field-test results were used to make changes in the wording of some items that were not clear to the participants. The final step in the scale development process was a state-wide study of 392 parents and other primary caregivers of children birth to eight years of age residing in 46 of the 67 Pennsylvania counties. The participants included the mothers of these young children (84%) and the children’s fathers, grandparents, and relatives (16%). Sixty percent of the participants’ children had an identified disability or diagnosed development delay, whereas 40% of the children were at-risk for a developmental delay or without any condition associated with a delay.

The scale the participants completed included 90 items. Each of the items was rated on a five-point-scale asking the participants to indicate the extent to which they agreed that the item best described their family and child(ren)’s life circumstances. The participants’ responses to the items were used to perform item analyses and assess both the reliability and validity of the six scales. The statistical properties of the scales met accepted reliability and validity standards. This was not unexpected since the item content was selected based on what parent and professionals agreed were important indicators for measuring community, family, and parent and child quality of life.

The findings from all phases of the project were used to develop the final versions of the scales for measuring the outcomes for children participating in different kinds of early childhood programs and their families. Since many participants said the scales were too long, the item pool for each of the six outcome categories was reduced from 15 to 9 items.

Based on feedback, two scales were developed instead of just one: Everyday Kids, Everyday Lives Scale, and the Family and Child Early Experiences Scale. The Everyday Kids, Everyday Lives Scale includes 54 outcomes indicators in the six outcome domains in one scale. The Family and Child Early Experiences Scale has six separate scales, one for each outcome category. The item content is the same as on the Everyday Kids, Everyday Lives Scale. However, since some program staff stated that the content of some sections did not match their program and they would not consider using a scale that included items on all six outcome
categories, we developed a scale that has the six separate scales.

The Measuring Outcomes for Children project produced a wealth of information about what parents and professionals consider important indicators of the community, family, and parent and child factors that lead to quality of life outcomes for children. This information and these scales should be useful to inform the next generation of efforts to improve the lives of young children and their families in Pennsylvania.

[Special note: you can follow this link to the Smokey Mountain Research Institute for all documents on this effort, including the survey materials.  Click Here. ]

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*Submitted by Temple University

Every day, Pennsylvania law enforcement officers, prosecutors, defense attorneys, and judges encounter people with intellectual and developmental disabilities in their roles in the criminal justice system as victims, defendants, and witnesses. At any time, anyone can become a crime victim, a defendant, and/or a witness of a crime. However, individuals with disabilities are at increased vulnerability of victimization regardless of their living situation, and frequently not perceived as credible witnesses. The Bureau of Justice Statistics reported in their Crimes Against People with Disabilities 2007 Report that persons with disabilities were victims of an estimated:

• 47,000 rapes
• 79,000 robberies
• 467,000 simple assaults
• females with a disability had a higher victimization rate than males with a disability
• males with a disability had a higher rate than females without a disability

Additionally, research indicates that more than half of the crimes committed against people with disabilities are never reported to law enforcement. When crimes against people with disabilities are reported there is a lower rate of prosecution and conviction as the criminal justice system does not perceive people with intellectual and developmental disabilities as believable and/or credible witnesses.

Conversely, when individuals with disabilities are arrested and charged with a criminal act, they are perceived by the criminal justice system to be believable and credible. It has also long been recognized that inmates with disabilities are more likely to be victimized, exploited, and injured than other inmates within correctional facilities. They are also more likely to be charged with disciplinary violations, and, partially, as a result, to serve longer sentences.

State and federal correctional authorities reported increases in their prison population during the first six months of 2009 with the Federal Bureau of Prisons reporting the largest increase followed by Georgia and Pennsylvania. The PA Department of Correction identified an estimated 110 inmates with mental retardation during 2009. This figure does not include inmates confined to local county jails because local jails are not required to collect this information.

The recognition of how people with developmental disabilities are treated within the criminal justice system is not new. With the exception of the discussion, activism, and federal legislation regarding the death penalty for persons with intellectual disabilities, there remains no long-term concerted collaborative national or local initiative to address the complex and unique dynamics people with disabilities face when they come into contact with the criminal justice system. Some examples of these dynamics and issues are but not limited to: (1) the speed and/or lack of speed of the criminal justice system, (2) language, (3) literacy, (4) Medicaid coverage, (5) the conflicting philosophies, principles, and practices that guide the criminal justice system and the disability community.

Bridging the chasm between the philosophy, principles, and practices of the criminal justice system and disability service system is a major challenge in developing an effective criminal justice model. In principle, the law enforcement, judiciary, and corrections components each have their own specific roles and responsibilities as mandated by state legislation and/or local jurisdictions. Each component states that anyone who comes into contact with their specific component of the criminal justice system is treated equally. However, the implementation of this principle fails and is flawed in practice and reality. Criminal justice professionals are often unaware of the lengths a person with an intellectual disability will go to minimize or conceal his/her disability. The Cloak of Competency concept and its impact on a defendant is relatively unknown within the criminal justice system.

For decades, self-advocates and/or their family members have been taught how to fight for their rights. They have been taught to write personal letters, organize letter writing and call-in campaigns, and to reach out to others, including the media, to have their voices heard. These strategies have been successful in advocating for the supports, services, and policy changes that enhance the lives of people with disabilities. However, the same strategies do not work in the criminal justice system. In fact, they might work against the objective for which the individual or family member is advocating.

The criminal justice and disability service systems continue to be ill-prepared to ensure that individuals with developmental disabilities are afforded their legal rights. The conflicting philosophies of the different systems, the misconceptions and stereotypes, lack of knowledge and skills, and politics within both the criminal justice and disability systems places victims and defendants at risk of not receiving equal justice.

The Equal Justice for People with Developmental Disabilities project will continue to play a crucial role in pushing back the forces of ignorance and stagnation that allow systems designed to provide justice fall short of what is possible and advocating for the legal rights of people with disabilities.

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