Va. Beach tragedy sheds light on home health care field

April 22--Home aides for Joshua Smith had failed to come to his mobile home in Virginia Beach before, according to his grandfather. And that could be frustrating for Smith, who couldn't walk, feed himself or get in and out of bed on his own.

On those occasions, Smith -- who had cerebral palsy, diabetes and an amputated leg -- often would rely on family and friends to help him.

But on Oct. 24, Smith, 35, was alone with his roommate when a fire ripped through the home in the early morning hours, killing them both. Smith's body was found inside the front door.

In early April, Smith's mother and grandfather filed a $50 million wrongful death suit against an agency, Hand 'n Heart, that coordinated his home-based care and two employees -- one who left at midnight and another who was in charge of sending a replacement for the midnight-to-6 a.m. shift.

The president of the agency said in an email that Smith had declined an offer from Hand 'n Heart to find a replacement for an aide who had a family emergency that night. That conversation is in dispute.

The case highlights the increasing importance of home health aides and personal attendants in a society where more people with disabilities are living independently in homes and apartments rather than nursing homes and state facilities.

Medicaid, the joint state and federal insurance for the disabled and low-income, foots much of the bill for the aides. Most Medicaid spending goes toward institutional care, but the amount funneled to in-home care is growing: In fiscal year 2011, home- and community-based care accounted for 45 percent of Medicaid spending, up from 32 percent a decade earlier.

Direct-care workers provide the backbone of that system -- people such as home health aides and personal care attendants, two positions that are projected to grow about 50 percent during the next decade.

The pay, though, is notoriously low, with advocates for the disabled fighting for the government to increase Medicaid reimbursements. The jobs are often part-time and without benefits. Turnover is high, which can lead to a fractured system.

If employees don't show up at a retail store or restaurant, customers get slower service. If direct-care workers don't show up to care for someone who is severely disabled, that person doesn't get out of bed.

"I hear people say 'I am 100 percent disabled,' but then you see them out cutting the grass," said Garland Carter, Smith's grandfather. "But Joshua was 100 percent disabled. If you gave him a glass, he'd have to use both hands to hold it, and he'd drop it before he got it to his mouth."

Smith was born prematurely and diagnosed with cerebral palsy, a movement disorder caused by brain damage that typically occurs around birth.

He was never able to walk, despite orthopedic surgeries that entailed full body casts and an artificial hip. Mentally, though, "he was sharp as a tack -- he had a brilliant mind," said Carter, 78, who lives in Virginia Beach.

Carter and his wife took care of Smith most of his growing-up years, after his mother divorced and moved out of state.

Carter's first wife died shortly after Smith graduated from high school, and Smith began living in a number of nursing homes and group homes for people with disabilities. But Carter said he never fit in because most of the people in the nursing homes were older, and many in the group homes had mental disabilities as well as physical ones.

Then he learned about a program where Medicaid would pay for in-home nurses and aides to help him live independently. That's when Smith began living in a series of apartments and motels, which he liked better than institutional care.

Some of the places, Carter thought, were in undesirable neighborhoods, but Smith was the one who made the arrangements, and his disability check was limited. Eventually, he moved into the County View Mobile Court trailer park in Virginia Beach.

He also befriended a man named Karlton Rich, and they lived together in the mobile home.

Carter said a case worker determined how much care Smith needed, and that decided how many aides came to help him with daily activities such as getting in and out of bed, going to the bathroom and making meals.

"Someone had to put him to bed and get him out of bed," Carter said.

Occasionally, over the years, aides would fail to show up or call to say they were unable to come. Sometimes Carter and his wife would help because they were only 12 miles away. Carter also had someone nearby he could call when Smith needed assistance.

Sometimes, though, Smith would say he'd be fine until the next shift worker came. His grandfather suspects he didn't always call and would just make do.

Carter said he had concerns about Rich, who had been homeless, struggled with drugs and mental health problems and was himself disabled. Carter's attorney, Eric Washburn, said the agency should have been aware that Rich was not able to give Smith the care he needed.

Carter said caregivers changed frequently. He doesn't know how long Smith had been using Hand 'n Heart, a home care services agency whose website says it provides services in Virginia Beach, Williamsburg and Richmond.

The last time Carter talked with him, Smith said he had been experiencing pain in his artificial hip, which would sometimes come out of the joint. He was on steroids and pain medication, which an aide would give him before bed, that also made him drowsy.

One morning a day or two later, Carter was watching the local news and saw a mobile home in flames. Two people and a cat had died. His grandson had a cat named Pumpkin.

"That's Josh's trailer!" Carter yelled to his wife.

He tried to call Smith and couldn't get through. A relative who worked for the Virginia Beach police arrived to let him know his grandson had died.

Carter went to the scene, despite the relative telling him he shouldn't. It was about 7:30 a.m., and nothing was left but a burned shell.

A Virginia Beach fire investigator's report written in the days to come would reveal more detail.

The investigator talked with employees from Hand 'n Heart, and with neighbors who told him that Smith and Rich were heavy smokers. The roommate would sometimes take an ashtray to Smith while he was in his bedroom.

A Hand 'n Heart aide was on duty Oct. 23 from 6 p.m. until midnight. Another aide was supposed to relieve her at midnight and stay until 6 a.m., but that aide called to say she had a family emergency and could not make it.

The investigator talked with two employees who had different versions of what happened next.

One said an agency employee called Smith to say the aide wasn't coming and asked whether he wanted her to send a replacement: Smith told her his roommate was there and that he didn't need one.

But an interview with another employee said a replacement was not offered.

According to the lawsuit, the aide who had been there, Elizabeth Lancaster, offered to stay longer until someone else came, but the agency told her not to.

David Mainguy, president of Hand 'n Heart, said his company had not received notice of the lawsuit yet and that he could not comment on the case. In an email, he said his agency and employees were not the primary caregivers for Smith.

"In fact, this client did not receive continuous 24 hour services from our agency because of the presence of this adult who was responsible for safeguarding his welfare and providing primary care," his email said, referring to Rich. "The client was not left on his own when he declined the offer of a replacement home health aid as the second resident was present the night of the fire."

State health records show no complaints or inspection deficiencies for the agency.

The cause of the fire was undetermined. The investigator, though, said it probably originated outside under the deck, just to the right of the front door. Rich was known to use a tin can as an ashtray and was frequently seen sitting on the deck, smoking late into the night, the report said. A tin can was found outside the door in the area where the fire is believed to have started.

When someone opened the front door, the fire quickly spread to the inside of the mobile home.

There was another door, Carter said, but that one would have been harder for Smith to use to escape.

Washburn said if the aide had been on duty, she would have been awake to see the danger and help Smith escape or call 911.

Medicaid pays for home-based care through a waiver system, in which either an agency or the clients themselves coordinate and hire home care.

Maureen Hollowell, director of advocacy and services at the Endependence Center, which helps people with disabilities live independently throughout South Hampton Roads, said Medicaid regulations place responsibility on both parties where aides are concerned.

The person covered by Medicaid is supposed to have an emergency backup plan in case a home aide is unable to come. The agency also has obligations, and if it has a continued pattern of missing shifts, it needs to tell the client to find another agency.

Marilyn Fall, president of Elder Care At Home Inc., which coordinates in-home care for families, said that at her agency, if an aide has an emergency and can't fill a shift, the client is called and offered a replacement. One of three nurses could fill in for the shift. If a client doesn't want a replacement, that must be documented.

Whether an aide would have made a difference for Smith on Oct. 24 is a question his grandfather thinks about often.

Carter imagines that Rich and Smith were trying to get out and instinctively went to the front door, with Rich trying to help Smith. Opening the door caused the fire to sweep in.

The fire investigator's report said Smith was found in the living room, lying on his back just inside the front door. Rich was found in the kitchen.

Carter said his daughter, Donna Hilton, contacted a lawyer about suing the home care company.

He said he hopes the lawsuit, at the very least, will emphasize the importance of home aides in the world of the disabled, and maybe even save the life of someone like Smith.

Elizabeth Simpson, 757-222-5003, [email protected]

___

(c)2015 The Virginian-Pilot (Norfolk, Va.)

Visit The Virginian-Pilot (Norfolk, Va.) at pilotonline.com

Distributed by Tribune Content Agency, LLC