In Anne Arundel County, 19 people with very significant disabilities suddenly lost their Medicaid personal care services when the County called them and said their staff wouldn’t be coming the next day.  Most of the individuals have physical disabilities that require assistance with bathing, toileting, dressing and eating, and their family members are aging, ill or otherwise unable to perform these tasks.  These individuals were reliant upon the 2 hours/day of this personal care each morning.  They were also getting services from the Developmental Disabilities Administration to cover the rest of the day and these DDA services were unaffected, but the following examples illustrate the impact of the unanticipated loss of personal care:

“Corinne,” 54 years old, needs total care because she had spinal meningitis when she was an infant.  Her family is no longer able to meet her needs since her mother is in a wheelchair and receives dialysis and her sister, who has been helping, was recently injured.  This family can’t compensate for the loss of personal care services.

“Jaime” is 22 years old and lives with his grandmother, who is his primary caregiver, and his aunt.  He has cerebral palsy (CP) and quadriplegia.  His grandmother was given three hours notice that his personal care would terminate, and soon afterward she had a stroke that she attributes to the stress of losing the service.  Jaime’s grandmother is very ill with cardiac problems and an infection in her foot.  HIs aunt works full time and pays for staff that should be Jaime’s entitlement.

“Sharon” is 27 years old, has CP and extremely contracted muscles, has had multiple surgeries, and uses a wheelchair and a feeding tube.  About the time her father had hip replacement surgery, Sharon developed a very serious wound that her mother attributes to inadequate repositioning at her day program.  Also around the same time, Sharon’s personal care staff had to resign for personal problems, and then the personal care was terminated.  During Sharon’s lengthy recuperation from surgery on her wound, she will be unable to return to her day program.  Her mother can’t work many hours because she attends to Sharon’s needs 24 hours/day except for the 32 hours/week that DDA provides staff support.  This family has been in crisis without personal care services.

MDLC learned of the terminations shortly after they occurred and intervened with the State, explaining that the terminations failed to comply with the individuals’ right to get advance notice of the terminations, be informed of their right to appeal, and to request that services continue pending the outcome of the hearing.  The Office of the Attorney General agreed with MDLC and asked the County to reinstate services.  When services weren’t immediately reinstated, MDLC again contacted the State.  The County received instructions to reinstate the 19 individuals, and MDLC ensured that the County was following through.  The services are being reinstated, although some of the staff had already taken other jobs and finding other staff can be a lengthy process.  MDLC is also working to resolve the systemic issues that led to this problem:  i.e., under what circumstances can people receive Medicaid personal care services as well as similar services from DDA on the same day.  Regulations governing this area are interpreted differently in each county in Maryland.  MDLC is working to keep this problem from being repeated.