Psych events at Johns Hopkins Medicine are free. Save the date if you're in the Baltimore area, for their 30th Annual Mood Disorders Symposium. Parents for Care for will be there!!
When my husband, Eric, a hard-working Philadelphia lawyer in his early fifties with no history of health problems, suffered a stroke on a business trip in Chicago, the event opened my eyes to the challenges facing caregivers dealing with our current health care system.
I flew straight to Chicago, leaving our 13-year-old daughter with my mother, unsure of when I would return.Though frightened and anxious, I figured that my experience as a registered nurse and administrator at a world-renowned academic health center would help me navigate whatever awaited us. Still, steering Eric’s care through two hospitals in Chicago and a rehabilitation center here in Philadelphia – even just getting him transported from one place to another – proved to be a monumental undertaking.
Eric spent 10 days hospitalized in Chicago, where he was cared for by more than 50 health care professionals and students. From shift to shift, information was passed along like a game of whisper down the lane. It was up to Eric, as the patient, to repeatedly correct the inaccuracies.
The hospitalization was hard. But it did not compare with what would confront us after Eric got sent home.While he was in a hospital, if I had a question about anything, I had 24/7 access to one of Eric’s registered nurses. Butwe needed just as much help when he was an outpatient, and it was not readily available.
Upon Eric’s release, we were given 10 pages of rehabilitation instructions, a list of five specific medical personnel Eric was going to have to see, seven prescriptions with 29 pages of information about them, and another dozen pages on how to deal with other issues.
Although all of it was written in lay terms, it was just too much information to absorb. No one reviewed it with us to make sure we understood the key points. No one had any communication with Eric’s longtime primary care doctor. There were mistakes with prescriptions. There was even a voicemail message awaiting us in Philadelphia, announcing that we were “being placed in collection” for an outstanding $23,312 bill, a clerical error that took me thirty days to correct.
Simply coordinating Eric’s care, at times, seemed impossible.Once home, Eric needed blood drawn frequently, starting with the day after his discharge. But where would we find a lab to do it? What about the neurologist appointment required in two weeks when the next available appointment was in five months? Finally, lost in the shuffle were Eric’s records and imaging studies from Chicago, misplaced by the rehab center here in Philadelphia.
We got through it, relying at times on my own medical knowledge and the assistance of those I knew in my professional network. But how does a caregiver manage without familiarity with the system? I can only wonder.
After Eric left the hospital, we had no identified point of contact, no phone number, no e-mail address to use for support or guidance. No one had the responsibility to be knowledgeable about Eric’s comprehensive care plan, and no one helped coordinate his still-complicated care once he was home.
Outside the hospital, there needs to be that same coaching, coordinating, and round-the-clock support for patient needs--available over the phone for both patients and their caregivers.
We have to figure out a way to handle care transitions—the experience of moving from one care setting to another and moving among different care providers —in a kind, sensible, thorough, and realistic way.
For starters, we need:
Beth Ann Swan is dean and professor at the Jefferson School of Nursing at Thomas Jefferson University. She originally wrote this story for the November issue of Health Affairs.
Representative Payee: To Be, or Not To Be?
By Kathy Day
Disclaimer: The following information is NOT intended as legal advice. It is information I gathered from experience and by educating myself. Every situation is different and every person is different. Please make choices based on your own experience.
When your loved one received benefits from Social Security (SSI or SSDI), they may be required to have a Representative Payee (someone who handles the benefits on behalf of the beneficiary). It is difficult to choose whether to act as payee for your family member, or whether to transfer payee responsibilities to a neutral third party. There are professional agencies who perform this service for a very small fee, and some mental health agencies will also act as payee. It’s best do your research before deciding.
In my experience, having a family member act as payee is not necessarily best. When you come between your loved one and his/her money, it can be awkward at best and dangerous at worst. If you act as payee, you must be able to firmly establish ground rules for your role as payee. You must also abide by the rules established by Social Security on what the payee’s responsibilities are.
If you choose to act as payee, you will have more discretion on how the money is spent. There will be less red tape than there would be if you were to use a third party payee. If you use a third party payee, your loved one will often have to purchase items first and then submit receipts in order to get reimbursed. If you act as payee, you can purchase items for your loved one directly. If you want to encourage independence in your loved one, it may be easier by using a third party payee, as your loved one can then interact with the payee directly.
If your family member lives with you, make sure you have an agreement to charge for room and board. You can set any amount that you and your loved one agree upon. This way you can be sure to be paid for living expenses to help your loved one understand that there is a cost to living in your home. Charging room and board also reduces the amount of cash your loved one has. This is good, especially if there is a co-occurring substance use disorder.
If you incur any expenses on behalf of your loved one, make sure you pay yourself back (if you’re payee) or submit an expense report to the payee (if you use a third party). Receipts are important to establish what the funds are used for. For instance, if your loved one is has medical appointments or legal appointments that you transport them to, make sure you’re reimbursed for mileage and parking.
These are just a few suggestions for family members who are required to have a payee. If you have any other suggestions, please contact us using the contact us form on the website.
When Your Loved One is Incarcerated….
By Kathy Day
Disclaimer: The following information is not intended as legal advice. It is information I gathered from experience and educating myself. Every situation is different and every location is different. This is intended as a loose guide to mental illness in the criminal justice system.
Finding out your loved one with mental illness has been arrested is a very frightening experience. The legal system isn’t easy to deal with, especially when your family is in crisis due to an arrest. The following points will assist you in helping your loved one: