Philadelphia Coordinated Health Care (PCHC) is involved in many health
care projects on an ongoing basis. These projects grow and change to meet the
changing health needs of people with intellectual/developmental disabilities
(I/DD), their families and others in the service system in the Southeastern
Region of Pennsylvania.
If you are interested in any of our projects,
please contact us using our mailing address and phone information shown on the
left-hand side.
PCHC Projects
Alzheimer’s Disease Initiative
PCHC staff have been working with representatives of the Alzheimer’s
Association to develop resources to meet the needs of individuals with
intellectual/developmental disabilities (I/DD) and Alzheimer’s disease.
Efforts have included the development of training on Dementia and I/DD
that was offered to nurses from the Southeastern Region of Pennsylvania.
In addition, PCHC staff and Alzheimer’s Association representatives,
collaborating with a broad range of professionals, are working to develop
a functional assessment tool in this area. Other plans include developing
a guide for trainers on Dementia and I/DD (including the PowerPoint
presentation developed for the nurses training offered earlier)
and exploring the possibility of support groups for individuals,
families and staff.
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Behavioral Health Therapist Survey
PCHC is in the process of identifying therapists contracted with the Behavioral
Health entities in each county in Southeastern Pennsylvania to determine
the resources available to individuals with dual diagnosis
(i.e., intellectual/developmental disabilities and mental illness).
PCHC staff are contacting therapists to determine willingness to and experience
in treating individuals who are dually-diagnosed. PCHC staff are available
to provide training and supports for therapists as requested.
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Behavioral Health Training for Individuals with
Intellectual/Developmental Disabilities (I/DD)
Behavioral health training is currently being piloted for individuals with
intellectual/ developmental disabilities (I/DD). The series includes:
Understanding Challenging Behaviors; Mental Illness; and, Stress.
A bookmark and pocket guide on these topics are being developed. A future
training on how to manage one’s own behavioral health care will be developed.
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Breast Health Initiative
PCHC staff routinely provide training on breast wellness and health throughout
the Southeastern Region of Pennsylvania. An informational brochure breast
health is also being developed to increase information available in the
Southeastern Region.
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Cancer Prevalence Survey
PCHC is conducting a survey of all residential agencies throughout the
Southeastern Region to determine the prevalence of cancer for people with
intellectual/developmental disabilities (I/DD). Information gathered will
guide efforts to enhance access to quality health care in communities throughout
the region.
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Community Hospital Outreach Project
The Community Hospital Outreach Project began in 2006 with the assistance of
an intern from Temple University’s School of Public Health. The project was
designed to outreach to area hospitals to educate and provide resources for
supporting people with intellectual/developmental disabilities (I/DD) during
hospitalization.
An educational presentation was developed with modules so that the presentation
can be customized to meet the needs of each hospital. The components include:
HIPAA, communication, behavioral manifestations of physical illness, the I/DD
system of supports, licensing, medication issues, conditions and syndromes,
appropriate interaction, and discharge planning.
PCHC staff are available to make presentations at hospitals throughout the region
as requested.
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Community Safety Booklet and Training
A Community Safety Booklet has been developed for people with intellectual/developmental
disabilities (I/DD) and their families. The booklet is now being used as part of
training to address issues of safety on the street, dealing with bullies and
strangers, safety when using money in the community, carrying necessary
identification and using 911.
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Developmental Disabilities (DD) Nursing Guide
The role of the developmental disabilities (DD) nurse is constantly evolving.
There is great diversity in what a DD nurse might do in the specialty of
developmental disabilities nursing. A primary goal of the DD Nursing Guide
is to provide an introduction to the developmental disabilities system and the
specialty of developmental disabilities nursing for a new nurse coming into the
system. The DD Nursing Guide, although focusing on nursing, provides an
explanation of how the intellectual/developmental disabilities (I/DD) service
system in Pennsylvania has evolved into what it is today and could be a resource
for anyone interested in I/DD.
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Dental Resource Coalition
During February 2007, a group with statewide representation, met to develop
and host a statewide Dental Summit. The Summit was held on June 22, 2007 in
Mechanicsburg, Pennsylvania. A group of stakeholders, now called the PA Dental
Resource Coalition, has continued to collaborate and has taken steps based on
recommendation/outcomes discussed at the Summit. During September 2008, the
first issue of By Word of Mouth…A PA Dental Resource Newsletter was distributed
by the Coalition.
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Diabetes Education
PCHC staff have conducted Diabetes training for nurses in the Southeastern
Region of Pennsylvania and addressed Diabetes issues in the quarterly Health
Care Alert. PCHC also collaborates with the Diabetes Education Department
at Pennsylvania Hospital (staff and graduate students) to educate individuals
with intellectual/developmental disabilities (I/DD) and their support teams
on how to best control Diabetes. Efforts include the development of
educational materials focused on understanding Diabetes, complications,
best practices and treatment.
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Disaster Preparedness
PCHC has worked with the Philadelphia Department of Public Health, the
Philadelphia Office of Emergency Management, and Temple University’s
Institute on Disabilities to develop Personal Preparedness Training.
The curriculum, near completion, is focused on preparing provider agency
staff, individuals with intellectual/developmental disabilities (I/DD)
and families for disasters.
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Dual Diagnosis Services and Supports
PCHC has been awarded a grant by the Pennsylvania Developmental Disabilities
Council to lead the statewide coalition of Health Care Quality Units (HCQUs)
in identifying and addressing issues faced by individuals with dual diagnosis.
Grant efforts will focus on compiling best practices, identifying promising
models of support, developing tools to assist in diagnostic work and creating
a curriculum for training behavioral health staff.
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Dysphagia Group
The Dysphagia Group was formed as an outcome of the Dysphagia Summit held in
May 2004. Members of this group include representatives of the Office of
Developmental Programs, county government, provider agencies, and HCQUs.
This group continues to meet periodically to review initiatives started during
the Summit including developing new ideas for education and training.
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Fall Prevention Forum
PCHC facilitated a regional risk management forum focused on fall prevention
during June 2008 for over 60 participants from Southeastern Pennsylvania.
The forum was developed in collaboration with the Risk Management Workgroup
of the Southeastern PA Office of Developmental Programs and County risk
management representatives from the entire Region. The forum addressed
clinical issues, practical strategies to limit falls, and a range of tools
and resources for use by individuals and their teams. The panel of presenters
included nurses, occupational therapists and managers.
Since the forum, PCHC staff has attempted to contact all participants of the
forum to determine the effectiveness of the Forum. Initial results of this
effort have been positive and the responses will be helpful in planning future
training and outreach activities.
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Feeding Tube Project
PCHC staff is in the process of developing a resource packet for provider
agencies regarding Feeding Tubes. The packet, including information for
staff, individuals with intellectual/developmental disabilities (I/DD)
and families, grew out of information collected during 2006 as part of
a Feeding Tube Survey. It is hoped that the resources included in the
packet will be useful to individuals facing decisions about the use of a
feeding tube.
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HIRS/Auto-HIRS/Family HIRS
The Health Information Recording System (HIRS) was designed to address the
need to keep legible, complete and understandable health records in residential
programs for people with intellectual/developmental disabilities (I/DD).
The HIRS provides a paper record of important health information.
The Auto-HIRS followed to address the need to record the same information
in more than one place in the HIRS. The Auto-HIRS automatically shares
information within a record, eliminating the need to manually record
information in more than one place. The Auto-HIRS is a computer program
that is compatible for use on individual computers or on a computer network.
The Auto-HIRS was a natural extension of the manual HIRS.
The Family HIRS was developed for use by families providing services for
their family member at home. The more complex the medical needs of someone
living at home, the greater the need to organize the person's health
information. The Family HIRS utilizes many of the same forms used in
the HIRS, but has additional forms and information to meet the specific
needs of families.
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Hospice Booklet
A Hospice Booklet has been developed by PCHC for individuals with
intellectual/developmental disabilities (I/DD), families and provider staff.
It is expected to be available for dissemination during Fall 2008.
Training is available from PCHC regarding hospice supports and the needs
of individuals with I/DD throughout the Southeastern Region of Pennsylvania.
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Nursing Forum Workgroup
The Nursing Forum Workgroup consists of PCHC nurses, county staff and provider
representatives. The Workgroup was instrumental in developing General
Guidelines for Nurses in Community Residential Programs Supporting People
with Intellectual/ Developmental Disabilities. The Nursing Forum Workgroup
is currently evolving into the Nurses Supporting Nurses Workgroup as its
primary role has become the development of a mentorship program for new
nurses entering the field.
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Active News – A Newsletter for People with Intellectual/Developmental
Disabilities (I/DD) & Their Families
Active News – a newsletter for people with I/DD and their families was
launched during 2008. The newsletter is published quarterly; the first
issue focused on Wellness and the upcoming issue will address Fall
Prevention.
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Prostate Health Initiative
Prostate cancer is a prevalent and deadly form of cancer for men.
Other prostate problems include Benign Prostatic Hypertrophy (BPH) and
Prostatitis. Any of these conditions can have a significant impact on
health and quality of life for the person experiencing them. As part of
the Prostate Health Initiative, the prevalence of prostate health problems
and health outcomes for people with intellectual/developmental disabilities
(I/DD) will be identified. In addition, useful information about prostate
conditions and treatment options will be shared throughout the Southeastern
Region.
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Speaking for Ourselves Initiative
PCHC hosts monthly meetings of the Philadelphia Chapter of Speaking for
Ourselves. At each of the monthly meetings, PCHC staff provide training
on health or health-related topics. The meetings also provide an opportunity
for individuals who use system services and supports to provide input on
PCHC materials and initiatives.
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