Parenting an Adult Child with Disabilities: Getting Assistance from a Care Manager

 

Ben with Carla Payne, January 2022

When I was a student at the University of North Carolina at Charlotte 30 years ago, I worked in the Alumni Office. Carla Wyatt Payne was the assistant director of Alumni Affairs and my boss. We became friends and have been part of each other's lives ever since. She and another friend were the first ones at the hospital when Ben was born.

I asked Carla to write about what she does as a care manager. The care managing profession is an invaluable resource to families who need assistance managing the care of loved ones. – Vanessa

By Carla Wyatt Payne

I became a Certified Professional Care Manager following the death of my father. As a family, we struggled to navigate the medical health care system. We couldn't afford services or find support for my dad's advancing needs. The month after his death, I returned to graduate school to study gerontology and discovered the profession of care management. 

Since 2010 I've worked with over 500 families. Within the past four years, I've also helped aging parents with middle-aged adults with disabilities. 

The parents recognize how their own health issues affect their ability to care for their adult child with disabilities. They need a trusted partner to manage the physical, emotional, social, spiritual and mental care of their adult child. 

Professional Care Managers who are members of the Aging Life Care Association and who are Nationally Certified Care Managers, follow strict ethical principles including never accepting referral fees from facilities, agencies or other third-party vendors. 

Care managers advocate and support their clients while keeping the guardian or family members updated. The client is always the care manager's first priority. The goal is to reduce stress and help the clients save time and money. 

 

Here are a few tips to help you provide the best care for your son or daughter:

1. Build a team of support. Introduce your child to many different people. Get them comfortable with other caregivers, friends and family. I've worked with two families who didn't bring in help and when the aging mother was hospitalized for a hip replacement surgery her adult son wouldn't allow anyone to assist in bathing him. It was a distressing time for the entire family. 

2. Create a notebook of specifics about your son or daughter. Explain what your adult child enjoys and doesn't enjoy. Be detailed with bulleted items. It will serve as a resource for caregivers. New care providers can get to know your child quickly with the right information. Make it simple using colored font or paper - LIKES (green) HATES (red). Ask your child to help with the list. 

3. Prepare an emergency bag. In case of an accident or crisis, fill a bag with a medication and allergy list, advance directives and comfort items for your adult child. Make a separate tote for yourself to keep in the car. Include a lightweight sweater, extra phone charger, Tylenol, a non-perishable snack, cash for vending machines, chapstick, notepad, pen and a puzzle book or novel in case you are waiting for hours. 

More information about care managers and what they do:

• Aging Care Matters in Research Triangle in North Carolina, call Carla at (919) 525-6464 or email Carla@AgingCareMatters.com.
  
  
• Aging Life Care Association
  
  
• Find an Aging Life Care Expert Near You
  
  

"Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges.

• Talking About the Future
• Guest Post - Matt Wilson
• Legal Guardianship, Medicaid and SSI
• Researching Group Homes
• Questions to Ask at a Group Home Visit
• Referral Packet for Group Homes
• Getting Assistance from a Care Manager
• From Group Home Placement to Discharge
• Reaching for Independence