Healthcare Transitions
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When transitioning from pediatric doctors to physicians that treat adults, it's important for parents to help their young adult decide if they want to have a primary physician or go to a family doctor where the parents can remain an active participant in their care.
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When requesting medical records to be sent to the new doctor, a 1-2 page medical summary is a less overwhelming way for the new doctor to get to know their patient.
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The summary can include past medical and surgical procedures, any current medical issues, a medication list, specialists who are still involved in care, and recommended tips that worked successfully with the previous doctor. A current copy of the patient's immunization record is helpful especially for patients who will be attending college.
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When your child turns 18 years old and isn't able to make medical decisions for him/herself, setting up a Guardianship and Power of Attorney (POA) is vial, otherwise, medical professionals may exclude you for making medical decisions like surgery, medication, even to let you in the room, etc. Setting up Guardianship and POA is important. Click here for more information.
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What is personal care management?
It's a guide to life management and continuing of care with medical issues, safe living environment, psych-social interactions and vocational. Many people seek personal care management if they are overwhelmed or unable to be fully involved in their loved one's daily care anymore. Sometimes, it's because family members disagree to the nature, scope and costs of care to reach their optimal quality of life. Other times, you may want someone to "drop in unannounced" in a group home to make sure your loved one is being taken care of especially if family lives out of state is unable to oversee to day to day care. If there is a lot of money in someone's trust, choosing personal care management as a 3rd party to advocate against predatory behavior that may diminish funds. If the loved one has multi-faceted conditions that family members aren't knowledgeable about, some personal care management organizations staff nurses to advocate for the client's optimal health. If the family is facing a 302 psychiatry involuntary commitment situation, a professional may be a better choice to avoid future family friction with the patient.
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When choosing a provider, what should you look for? First and foremost, make sure the staff is trained and highly qualified with thorough knowledge in their specialized field. Credentials are important. Flexibility especially in emergency situations with attention to detail to your loved one's current and future needs can be critical. Make sure advocates are sensitive to your family dynamics, assertive and more importantly have the ability to "think out of the box" to help the client because each situation is unique and may require more creative solutions. Do they fire bad employees? Interview more than one and compare to see which is the best fit for your situation. Most organizations will meet with you for free to discuss needs and resources. If money is an issue, a provider can call support agencies for people who can't afford it. You can also purchase life insurance and have the money go to a testamentary trust. https://en.wikipedia.org/wiki/Testamentary_trust Many are private pay or fee for service.
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Other things to look for include:
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Strong organizational support
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Are they stable enough for future care? How long have they been in business?
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Cloud based technology for HIPPA protection
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Employees--not 1099 contractors
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Employee criminal background checks/licensure
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Fully insured and bondable, owners of company have credit checks
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What services can you expect?
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Develop a positive relationship with the client to listen to their complaints and make changes to their care plan as needed.
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They will collect, analyze, and store medical records.
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Go to doctor visits to express the needs and desires of client.
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Go to IEP meetings especially if it involved healthcare
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Perform ongoing oversight of care
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Facilitate communication between all members of healthcare team.
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Schedule and unscheduled visits to residence or facility like a group home to oversee care.
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Can assist in finding meaningful employment opportunities for adults.
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They will advocate for their client 24 hours, 7 days a week, 365 days a year.
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What if my doctor doesn't think I can make my own decisions?
Healthcare Representatives can make decisions for me. This includes parents, adult siblings and friends can be a Healthcare Representative. You have the right to say no to their healthcare decisions.
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What's a Healthcare Representative?
Health Care Representative is a person whom the patient authorizes in writing to make any and all health care decisions on their behalf including the decision whether to withhold or withdraw life support systems.
What is a Health Care Agent?
This person has a duty to follow your wishes even if the agent does not agree with them. If your health care agent does not know your wishes, the health care agent must determine what is in your best interest and act accordingly.
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Where can I turn to if I have questions or need support?
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The PEAL Center (Parent Education & Advocacy Leadership Center)
The mission of the PEAL Center is to ensure that children, youth, and adults with disabilities and special health care needs lead rich, active lives and participate as full members of their schools and communities by providing training, information, parent leadership, and technical assistance based on best practices to individuals and families and all people who support them. (taken from website)
Services: Advising parents about IEP meetings over the phone and health related issues. Also teaching self-advocacy for individuals with disabilities.
Where: 520 Christopher Columbus Blvd, Suite 602, Philadelphia, PA 19123
Call: 215-567-6143
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iKor Life Care Management
Services: Medication management and healthcare advocacy, iKor is staff with experienced registered nurses.
Where: 3477 Corporate Parkway, suite 100, Center Valley, PA 18034
Call: 855-367-4567
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PA Health Law Project
Services: Protecting and advancing health care rights through free legal services, community education, and systemic advocacy.
Where: 123 Chestnut Street. Suite 404, Philadelphia, PA 19106
Call: 215-625-3990