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PCHC Projects
Health Care Projects

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.

PCHC Projects

Alzheimer/Dementia Initiative

PCHC has worked with representatives of the Alzheimer’s Association to develop resources to meet the needs of individuals with intellectual disabilities (I/D) and Alzheimer’s disease. Efforts have included the development of training on Dementia and I/D that was offered to nurses from the Southeastern Region of Pennsylvania. As a result of that training, there were concerns of not having a screening tool for families and Direct Support Professionals to use and share with physicians. As a result a Southeastern Regional Dementia Task Group was formed.

Philadelphia Coordinated Health Care (PCHC) and the SE PA Regional Dementia Task Group along with clinical support provided by Carl V. Tyler Jr, MD, MS, CA Geriatrics, CMD, Fairview Hospital/Cleveland clinic developed the Southeastern PA Dementia Screening Tool (DST). The tool was adapted from the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID), August 2007 by Professor Shoumitro Deb, MBBS, FRCPsych, MD, U.K. The tool was designed to be used by non-clinical staff, families and caregivers. Included on this website is the Dementia Screening Tool, Directions for the Dementia Screening Tool, and the Dementia Additional Testing List (possible testing to be considered by the physician).

The SE PA Regional Dementia Screening Tool (DST) was reviewed along with other tools by the National Task Group (NTG) and chosen to be the basis of their own version. PCHC staff is currently working with the NTG to assist in piloting an adapted version.

If there are any questions or training is needed regarding the Southeastern PA Dementia Screening Tool, instructions or testing please feel free to contact PCHC.

Philadelphia Cuidado Coordinado de Salud (PCHC) y el Grupo de Tareas Regional de Demencia del Sureste de Pensilvania, junto con apoyo clínico por el señor Carl V. Tyler Jr, MD, MS, CA Geriatría, CMD, Fairview Hospital / Clínica Cleveland desarrollaron este Instrumento de análisis para detectar demencia Sudeste de Pennsylvania (DST). El instrumento fue adaptado del Detección de Demencia Cuestionario para Personas con Discapacidad Intelectual (DSQIID), Agosto de 2007 por el profesor Shoumitro Deb, MBBS, FRCPsych, MD, Reino Unido. Este instrumento fue diseñado para ser utilizado por personas sin experiencia clínica, las familias y los cuidadores. Se incluyen en esta página web el instrumento de detección de demencia, instrucciones para el instrumento de detección de demencia, y lista de pruebas adicional de demencia (posiblemente pruebas para ser considerado por el médico).
Para cualquier pregunta o entrenamiento que seas necesaria en relación con los del Sureste PA instrumento de demencia, instrucciones o de prueba por favor no dude en ponerse en contacto PCHC. Back to Top

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. Back to Top

Breast Health Initiative

PCHC staff routinely provide training on breast health and wellness throughout the Southeastern Region of Pennsylvania. An informational Breast Health and Wellness Brochure has been developed to increase information available in the Southeastern Region. Back to Top

Cancer Prevalence Survey

Information about cancer prevalence in the general population is easily accessible; however, data about individuals with I/DD is not readily available. In 2008, the Cancer Prevalence Survey Project was initiated to determine the prevalence of cancer among individuals diagnosed with I/DD in the Southeast Pennsylvania in an effort to enhance access to quality health care and support services.

After an assessment of the data, there were findings of a noticeable lack of supports, counseling, and education for individuals, families and caregivers. PCHC currently collaborates with the American Cancer Society to outreach to people within the I/DD community to increase access to services available to people who have cancer. In addition, with the assistance of the American Cancer Society, PCHC created a Cancer Support Notification Form to help us identify those individuals who may be in need of guidance and support. It is our expectation that this project and collaboration will help to decrease the consistent challenges that people with disabilities face in having access to quality health care.

To request assistance please see the American Cancer Society Referral Form and PCHC Cancer Support Notification Form. Back to Top

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.

We can and should improve the hospital experience for those with Intellectual and Developmental Disabilities (I/DD). For more information, please see our Community Hospital Outreach Project brochure.

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. Back to Top

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. Back to Top

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.

For people who have intellectual disabilities as well as mental health challenges, the costs of support may tax the Intellectual Disabilities System. With the support of a grant from the PA Developmental Disabilities Council, a survey was undertaken to see what the real costs were for some of the most costly individuals. The Dual Diagnosis Cost Survey Report and Dual Diagnosis Cost Survey Executive Summary explains the survey, methodology and significant findings. Back to Top

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. For more information, see our Dysphagia Resource Guide and Eating, Drinking & Swallowing Checklist.

PCHC “Lista de Verificación de Comer, Beber y Tragar” es un instrumento creado para ayudar a los cuidadores de familiares con impedimentos a identificar potenciales signos y/o síntomas de Disfagia. El principal aporte de la “Lista de Verificación de Comer, Beber y Tragar” es ayudar a identificar indicativos de Disfagia. PCHC ayudo en la elaboración y publicación de esta lista de comprobación para el uso de cualquier persona que apoya a las personas con discapacidad intelectual (I.D.). Este formato deberá ser completado anualmente como requisito de las personas y deberá ser revisado por el doctor familiar. El Directorio de Recursos de Disfagia está disponible en Ingles y ofrece información, instrucciones, recursos, ejemplos y materiales de capacitación para apoyar a las personas que viven con Disfagia. Back to Top

Education/Outreach Program

PCHC began an Education/Outreach Program in 2012 to address professional students’ lack of experience working in the field of intellectual and developmental disabilities. PCHC is dedicated to giving students the opportunity to experience firsthand what it is like to work in the I/DD field by allowing them to: work with health service delivery systems, collaborate on local, regional and state level initiatives, develop training and presentation skills on various health related topics, promote access and create competency within the I/DD system and local medical community. For more information, please see our Education/Outreach Brochure 2012. Back to Top

Emergency 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 on preparing provider agency staff, individuals with intellectual/developmental disabilities (I/DD) and families for disasters and emergencies. Currently, we are partnering with the Philadelphia Department of Public Health to train staff and individuals with special needs how to properly prepare for emergencies. In addition, we aided in the design development and distribution of the Everybody Ready Health and Emergency Planning Handbook for Individuals, Families and Caregivers (versions 1.0 and 2.0). Back to Top

End of Life Committee

End of Life issues for people with Intellectual/Developmental Disabilities can sometimes be challenging. PCHC is facilitating a work group to gather information, relate situations that have occurred (good and not-so-good), and share the findings with those providing supports in our region. The Work Group is meeting from April through October 2012 and hopes to be able to provide needed resources by early 2013. Back to Top

Fall Prevention Forum

Raising awareness and prevention of illnesses, incidents and accidents to people with intellectual and developmental disabilities is a vital part of Philadelphia Coordinated Health Care’s education program. PCHC works closely with agencies, counties and the Office of Developmental Program’s regional risk management group on these issues. In 2008 we sponsored an all-day education session regarding falls which included: clinical risk factors, environmental modifications, fall prevention and a forum panel. In 2012, the Falls: Considerations for Risk Management document was created to assist risk managers when reviewing incidents regarding falls. This list is not all inclusive but was created to stimulate further discussion.

Further information regarding falls and screening tools can be found in APS Healthcare's Fall Prevention Program Resource Manual.
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Feeding Tube Resource Packet

PCHC developed a resource packet on information about Feeding Tubes. The packet, which includes information for staff, individuals with intellectual/developmental disabilities (I/DD) and families, was developed after conducting a Feeding Tube Survey in 2006. It is hoped that the resources included in the packet will be useful to individuals facing decisions about the use of a feeding tube and for those who already use a feeding tube. For additional notes, important contacts and questions that you should ask your doctor, please see our Feeding Tube Brochure. Back to Top

Healthy Eating & Exercise Initiative

The Healthy Eating & Exercise Initiative educational session was presented on Friday, April 20,2012. The session was geared towards men and women and their caregivers to broaden their knowledge on physical fitness and healthy living.

Click here to download our training and handouts for the Healthy Eating & Exercise Initiative. Back to Top


The Health Information Recording System (HIRS) 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 and bilingual (Spanish) 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. Back to Top

Men's Health Initiative

The Men's Health Initiative educational session was presented on Friday, August 5, 2011. The session was geared towards male individuals and their caregivers to broaden their knowledge on men’s health and wellness in the following areas: Prostate Health, Communication, Exercise & Nutrition, Hygiene and Relationships.

Click here to download the training and handouts for the Men's Health Initiative. Back to Top

Nursing Forum Workgroup

PCHC initiated an effort to review the role of nurses within residential agencies in order to identify core tasks. It was anticipated that these efforts would lead to recommendations about the most advantageous use of this nursing expertise. To begin the work, a confidential survey was conducted in December 2004. This was followed by a report of that survey in October 2005. As a result of the survey and report, a Nursing Pre-Forum was held in October 2006 and a Nursing Forum was held in December 2006. The Nursing Forum Task Force was formed in 2007 and included not only nurses, but county staff and provider agency representatives. The Task Force was instrumental in developing General Guidelines for Nurses in Community Residential Programs Supporting People with Intellectual/Developmental Disabilities for which you can request a publication. PCHC continues to support nurses in this specialized field in any way possible, including nursing school experiences and mentorship of nurses who are new to developmental disabilities nursing. Back to Top

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.

Click here to download the training and handouts for the Prostate Health Initiative. Back to Top

Special Needs Unit Collaborative

The Special Needs Unit (SNU) meeting meets quarterly and is comprised of individuals from diverse backgrounds with the same goal in mind – to share information about health insurance relevant to the special needs population. The SNU meeting provides a venue to discuss and exchange pertinent updates and changes about the current health insurance system including Medicare, Medicaid and MCOs. Typically, the Centers for Medicare and Medicaid Services as well as the Special Needs Unit Representatives of all 5 counties in the Southeastern Region of PA are in attendance at the meetings. For more information, please see our Special Needs Unit Brochure. Back to Top

Victims of Abuse Initiative

PCHC continues to work collaboratively with various agencies that support individuals who have been victims of abuse. For more information, please see Let's Talk About Sexual Abuse and Sexual Abuse Brochure.
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Women's Health Initiative

The Women's Health Initiative educational session was presented on Friday, December 2, 2011. The session was geared towards female individuals and their caregivers to broaden their knowledge on women’s health and wellness in the following areas: Physical Health, Health Risk Factors of the Female, Screenings & Health Maintenance, Exercise & Nutrition, Hygiene and Relationships.

Click here to download the training and handouts for the Women's Health Initiative. Back to Top

Disclaimer: Information and education provided by PCHC is intended as general information only and is not all inclusive or intended to replace physical, dental or behavioral health advice. If you believe that you, or someone you support, have physical, dental or behavioral health issues, please seek professional advice.