Established by:
Pennsylvania Department of Public Welfare
Office of Mental Retardation

Administered by:
Northeast Region Office of Mental Retardation
Berks County MH/MR Office
Service Access and Management, Inc.

Implemented by:
The ARC of Berks County

Creation of the Independent Monitoring Project (IM4Q)

In 1997, The Planning Advisory Committee (PAC) to Pennsylvania's Office of Mental Retardation (OMR) recommended that Pennsylvania develop the capacity for independent monitoring, in order to better understand the aspirations and needs of the people receiving support through OMR. This monitoring was designed to be conducted by people with mental retardation, families, and other interested people. In 2000, Independent Monitoring commenced an annual survey of one third of the Pennsylvanians who are living in licensed residential settings including private intermediate care facilities for people with mental retardation (ICFs/MR). This survey does not attempt to measure compliance with governmental regulations, but instead, the quality of life outcomes for people.

In order to do so, it was essential that the monitors are independent from the professional systems they were monitoring, and that the people receiving the services themselves play a central role in the monitoring process. Hence, the Independent Monitoring Teams (IMTs) who conduct the face-to-face surveys were comprised of at least two people, one of whom [when possible] was an individual with a disability or a family member. The monitors completed the data collection by June 30, 2000. The randomly selected one-third of the people receiving services in the state created a sample of 2,796 individuals distributed over 19 of Pennsylvania's county programs. Temple University's Institute on Disabilities, in collaboration with the PAC, designed the survey instrument, "Essentials Data Elements," both to minimize the monitoring burden and to ensure a statewide agreement on outcomes and reporting procedures. The instrument's questions measure quality of life in the areas of satisfaction, dignity and rights, choice and control, relationships, and community inclusion, as well as the impressions of the IMTs and the people's families, guardians, or friends.

How the project works

Each county arranges for a group or organization (in Berks County the organization is The Arc of Berks County) to take responsibility for IM4Q project in that county. The organization hires a Project Director and establishes and supervises interview teams who make visits to individuals selected in the county Mental Health/Mental Retardation (MH/MR) office. In Berks County, Service Access and Management, Inc. (SAM, Inc.) is responsible for identifying approximately one-third of the total number of individuals receiving casemanagement services to be interviewed each year. Each individual selected to be interviewed is contacted to verify their desire to participate. An information sheet is completed for each person to be interviewed and is forwarded to the IM4Q Project Director.

Upon receiving the summary sheet the Project Director assembles a team of 2 to 3 people to conduct that visit. Ideally, the team should consist of one person who has a family member with a disability; one person who has a disability; and one person who has no other involvement with the MH/MR system. The team members receive training about mental retardation services and the purpose and requirements of the IM4Q project. Each team member agrees to and signs a statement that he or she will maintain confidentiality about all information obtained during the interviews.

Once the team is formed and training is completed a team member will contact the designed individual, or his or her support person, to arrange for a convenient time to visit in the home. Visits should occur at the best time for the individual. Most visits are completed within a period of one hour.

The interview process

When the team arrives for the visit they bring the Essential Data Elements survey form created by Temple University's Institute on Disabilities. Ideally, the team would like to talk with the individual alone to complete the initial section of the survey and then complete the balance of the survey with the people who are providing supports. The team will ask questions from the survey and will write down the responses. These questions ask about work, neighborhood and the people who are part of the individual's life. The questions also ask what her or she likes to do in their spare time and what they think might make their life better. This is not a test - there are no right or wrong answers to these questions. If the individual doesn't understand a question, let the person know and he or she will try to explain it in a different manner. It's okay if someone doesn't know an answer to a question. The individual doesn't have to answer any question that they don't want to.

With the permission of the individual a person from the team will contact one of their close family members or a good friend or guardian to complete a brief survey about the services being receiving.

The team members are interested in seeing the personal space within the home as well as any other of belongings or things of interest that the individual would be willing to share with them.

Participation in the IM4Q project

By answering the interview questions, the individual is helping to determine how satisfied a person with a disability is, and how to make the supports and services better in Pennsylvania. This process is entirely voluntary. The project has established a schedule for interviewing one-third of the persons receiving specialized services each year. Every third year each individual will be contacted to schedule an interview visit. Participation is encouraged; however, if someone does not wish to be interviewed it is his or her right to refuse.

When the interview team leaves

All information received during the visit will be kept confidential. The collected data will be entered into the Pennsylvania OMR internet data system. No names or addresses are used when reports are written or talk about people in Pennsylvania. Reports will refer to all the people in the survey, or maybe talk about people from different parts of the state. Once the information is entered into the computer system only the Office of Mental Retardation can access your individual survey form. Answers and comments cannot be shared with any other organization or persons without your approval. The individual can give team members permission to talk to their provider agency or others if they would like them to assist in obtaining services or supports wanted or needed. Be aware that if the team who conducts an interview feels that the individual is in any kind of danger, the team is required to report their concerns to the responsible persons.

Questions?

If you have any questions about the project, your participation, confidentiality of information or anything relating to the IM4Q Project contact your Support Coordinator at Service Access and Management, Inc. (610-236-0530) or the Project Director at The Arc of Berks County (610-603-0227).

Interested in becoming a Team Member?

For details call Nettie Snider, Project Director, Berks County IM4Q
(610) 603-0227