How To Maintain Health While Living With Certain Health Conditions

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BY MELISSA A. DISIPIO, MSA, FAAIDD

Philadelphia Coordinated Health Care (PCHC) is the Southeastern Pennsylvania Health Care Quality Unit (HCQU) that provides indirect health care supports for people living with intellectual disabilities and/or autism for almost 30 years. Over its existence, PCHC has created several tools, resources and educational forms to help people understand how to care for the physical and behavioral healthcare needs of someone with special needs.

PCHC created Health Promotion Activity Plans (HPAPs) and Behavioral Health Promotion Activity Plans (BHPAPs) to help individuals, caregivers and family members understand a certain health condition or diagnosis. There, support staff complete their own promotion plan by using a blank template to record information specific to the person they are supporting. Having a detailed information sheet as a guide and resource will enable better treatment for all involved, supporting and caring for the person with special needs. If knowledge is power, then family members and caregivers can gain more power by having the health condition information at their fingertips.

PCHC is a non-profit organization that supports the physical and behavioral healthcare needs of individuals living with intellectual disabilities and autism living in Southeastern Pennsylvania. PCHC is a Health Care Quality Unit (HCQU) servicing five counties that make up Southeast PA, which includes Bucks, Chester, Delaware, Montgomery and Philadelphia Counties. Approximately 16,000 individuals live in this area of PA. PCHC has been committed to providing indirect health care support for more than 3500 people living in residential settings and at home with their families for almost 30 years. Their mission is to enhance access to community physical and mental health care through education, public health outreach, advocacy and empowerment as well as to improve health care outcomes for individuals with an Intellectual Disability (ID) and/or autism.

PCHC serves as public health entity for people with special needs. They provide technical assistance for health insurance coordination. They assist in obtaining durable medical equipment and other medically necessary items. They educate caregivers and individuals in the form of training, both in person and online. PCHC develops and provides a wide variety of resources posted on their website. Resources include, but are not limited to publications on different diagnoses (both physical and behavioral health), newsletters, family health information recording system and various forms and assessment tools to help identify certain health issues.

In today’s world, there is so much medical information at our fingertips due to technology that it is oftentimes confusing. The general public receives conflicting messages about how to care for their own healthcare, let alone someone with special needs. “How much coffee is good/bad for you?” “What is the best type of diet to lose weight?” “Is a glass of red wine a day good for you?”

PCHC recognized that individuals and their caregivers, including family members, sometimes need help to understand a medical diagnosis, terminology and instructions how to treat it. To help make it easier for everyone supporting a person with special needs with specific health conditions, PCHC created Health Promotion Activity Plans or HPAPs for short.

Doctor appointments can be a stressful time for the person being seen and their caretakers. Sometimes, there is not enough time to ask all your questions or you may not think about something until after you leave. Having the health promotion activity plans as a resource will help guide care and treatment for the individual in between medical appointments. They can also serve as a tracking document about specific medical conditions to present to the treating physician.

PCHC created Health Promotion Activity Plans (HPAPS) for over 100 different physical diagnoses. They range from Autism Spectrum Disorder, cystic fibrosis, diabetes, hyperthyroidism, seizure disorder to Williams syndrome (and a large variety of diagnoses in between). They are all listed alphabetically on PCHC’s website (www.pchc.org), under the “Resources” heading. They are free to download and use for anyone.

The Health Promotion Activity Plan (HPAP) is an easy way to plan supports for someone with a particular health care diagnosis. Each plan can be personalized to an individual’s needs. They provide:
• A definition of certain conditions, signs and symptoms
• A plan of action to be made to address one’s illness

Each Health Promotion Activity Plan (HPAP) has a template that can be used to describe the specific health condition in terms of its:
• Relevant body system
• General definition
• General signs and symptoms
• Signs and symptoms specific to the individual
• Details of the strategy needed to promote or support the person:
      ■ Information on how to support the health condition
      ■ Who is called for changes or problems in the person’s health condition?

      ■ What kind of documentation is tracked and who is responsible to follow-up?
■ What type of on-going training is needed for caregivers to support this person’s health condition?
• Frequency of support
• Desired outcome
• Person (family member, care-giver, etc.) or agency responsible

For example, understanding seizure disorders can be confusing. The signs, symptoms, duration and type of seizure can differ for everyone. Not everyone who has a seizure disorder will encounter the condition in the same manner and severity. Reviewing the Health Promotion Activity Plan on Seizure Disorder can give some guidance and support in caring for someone with it (see Seizure Disorder, Figure 1).

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Another example is when someone has diabetes. By reading and following the Health Promotion Activity Plan created for diabetes, the person’s caretakers will have detailed information to follow on how to treat the person, signs to watch for and follow-up steps to take (see Diabetes,, Figure 2).

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A blank Health Promotion Activity Plan (HPAP) is also provided for family members and care givers to fill out for a specific health condition tailored to meet the needs of the person they are supporting. You can use the pre-completed HPAPs for any diagnosis PCHC has created as a guide to help complete the form. Information from the doctor treating the condition should be included and can be reviewed with him or her during the person’s medical  appointment for accuracy (see Blank Form, Figure 3).

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It is a good idea to print out and share the Health Promotion Activity Plans so that everyone who supports the person with special needs can accurately treat the diagnosis. It is a great education tool to use for training or to educate a team about a specific diagnosis for the person. There is even room to document how the person responds, what type of training is needed, etc.

In addition to creating the Health Promotion Activity Plans for physical health diagnoses, PCHC has recently created similar plans for some behavioral health disorders. People with intellectual disabilities can also have mental illness. The different types of behavioral health conditions can be just as difficult to understand and treat. PCHC has created Behavioral Health Promotion Activity Plans (BHPAPs) for the following disorders:
• Attention Deficit/Hyperactivity Disorder
• Bipolar disorders • Obsessive-Compulsive disorders
• Depressive disorders • Psychotic disorders
• Manic disorders

The purpose of the Behavioral Health Promotion Activity Plans (BHPAPs) is to assist individuals who are dually diagnosed with a mental illness and intellectual disabilities, as well as those involved with his or her care with treatment planning. It is important to note that psychiatric diagnoses should only be made by qualified medical and/or mental health professionals. The BHPAPs will assist with understanding what common mental illnesses are by providing clear definitions, as well as a list of possible behaviorally observable symptoms that may be present for each disorder.

BHPAPs also provide information about support strategies and examples of psychotropic medications that are commonly prescribed. The goal of the BHPAP is to assist with identifying and tracking the symptoms of a given psychiatric disorder. Each Behavioral Health Promotion Activity Plan has a template that can be used to describe behavioral observations, support strategies, prescribed psychiatric medications, frequency of support and desired outcome(s) specific to the individual. The form also lists a space to list all the individuals responsible for following the plan and supporting the individual in his or her treatment.

Here is an example of one developed to help treat “Obsessive-Compulsive Disorders”: (see OCD, Figure 4).

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Health Promotion Activity Plans can be used for anyone, not just someone with special needs. It’s a great way to record how to treat a specific medical condition for each individual. The variety of both physical and behavioral health diagnoses serve as an aid and resource when caring for someone who has a number of different diagnoses. Caring for your own healthcare status can be daunting in addition to caring for someone with special needs. The HPAPs and BHPAPs are a simple way to organize and document medical condition information.

Living in a world where information is at our fingertips at any given time of day can be overwhelming. Having valuable and dependable resources created especially with special needs in mind can be an aid and support when helping to care for someone with a variety of medical conditions. Promoting health and wellness is a lifelong obligation that needs constant attention and care.

Anyone can contact PCHC for help: people with special needs, family members, caregivers, direct support professionals, supports coordinators, care mangers, etc. There is no fee for the service, training or to download materials from their website (www.pchc.org). •

ABOUT THE AUTHOR:
Melissa A. DiSipio, MSA, FAAIDD has worked at Philadelphia Coordinated Health Care for almost 20 years and was recently named the Director in May 2017. She is involved in many health care outreach initiatives such as Dysphagia, Dementia and Oral Hygiene. Melissa is an active member of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). She is a Fellow and Board Member for the American Association on Intellectual and Developmental Disabilities (AAIDD).