Nationally hundreds of thousands of people with disabilities live in group residences, known as board and care, adult care homes, or personal care homes. In South Carolina they are called “community residential care facilities” and are licensed by the Department of Health and Environmental Control. These facilities typically offer semiprivate rooms, meals, medication management, and some daytime activities. They are often in isolated rural areas or unsafe neighborhoods. Residents assign their disability benefits to the community residential care facility, and a state may, like South Carolina does, give additional funding to the facility. Far too often these funds yield grossly inadequate care with little oversight.
During 2007 and 2008 Protection and Advocacy for People with Disabilities, Incorporated, received many reports about the increasing frequency and severity of abuse and neglect at some community residential care facilities. The reports included deaths, sexual and physical abuse, and neglect, including the failure to administer medication appropriately and to supply basic necessities such as food, heat, and medical care. In an effort to expose and improve these conditions, in 2009 Protection and Advocacy released its investigative report, No Place to Call Home: How South Carolina Has Failed Residents of Community Residential Care Facilities. The report documented serious problems in nearly all areas reviewed, problems like insect infestation, failure to deliver medications, lack of heat and air conditioning, inadequate food, contaminated food, untrained staff, and yards filled with garbage. The unsafe conditions in the six community residential care facilities Protection and Advocacy visited had continued for months and, in some cases, years.
The 2009 report outlined five recommendations to improve protection for people with disabilities who live in community residential care facilities and focused on the need for better procedures to shut down poor facilities and for increased inspection and regulatory staff. The recommendations concluded, “The State and individual residents are paying for services that do not meet the standard of care established by regulation. It is past time to ensure safety and accountability in these facilities.”
Almost four years after the 2009 report, none of the five recommendations had been implemented. To spur some action, in April 2013 Protection and Advocacy released Still… No Place to Call Home. The 2013 report is based on inspections of 14 community residential care facilities, three of which had been included in the 2009 report. All 14 facilities served publicly funded residents. Protection and Advocacy found community residential care facilities that were dirty, did not supply enough food, did not appropriately administer physician-prescribed medications, violated resident rights, and failed to protect residents from harm.
Since the report’s release, changes have occurred, but much work remains to be done. Here we discuss the 2013 report and the changes that have been implemented since its release.
How Protection and Advocacy for People with Disabilities Became Involved
In 1977 Protection and Advocacy for People with Disabilities was designated as the protection and advocacy system for South Carolina. The organization has broad authority under state and federal law to advocate the rights of people with disabilities and to investigate allegations of abuse and neglect.
Protection and Advocacy’s Team Advocacy Project began in 1986 in response to repeated concerns about the quality of life for people in institutions and community residential care facilities. The South Carolina General Assembly authorized Protection and Advocacy to conduct unannounced inspections of community residential care facilities. Since 1986 Protection and Advocacy has conducted over 1,250 unannounced inspections of facilities across the state.
During inspections of community residential care facilities, Protection and Advocacy’s staff and trained volunteers tour the facility, meet with staff and the administrator, and interview residents. During most visits, the Protection and Advocacy team observes a meal. Protection and Advocacy staff also review resident records, medications and medication administration records, and personnel records. The Protection and Advocacy team sends a report summarizing the findings to the facility’s administrator, state agencies serving people living in community residential care facilities, and other organizations representing people with disabilities. The facility’s administrator is asked to address the report’s findings and submit a plan of correction to Protection and Advocacy. The plan is then sent to the agencies and organizations that received the initial report.
Protection and Advocacy’s 2013 study focused on those community residential care facilities that house residents who are publicly funded and that accept “optional state supplement” payments. The optional state supplement program is administered by the South Carolina Department of Health and Human Services. The optional state supplement amount received by each qualified resident is the difference between the resident’s monthly supplemental security income or social security disability insurance payment and the maximum room and board rate. The optional state supplement payment goes directly to the facility.
The Protection and Advocacy team attempted to make unannounced site visits to 15 community residential care facilities during a period of five months. The sample of 15 facilities included six small (16 or fewer licensed beds), four medium (17–40 licensed beds), and five large (40 or more licensed beds) facilities. The number of small, medium, and large facilities selected was representative of the total number of community residential care facilities accepting publicly funded residents. Of the 15 facilities, 40 percent were located in rural areas, and 60 percent were in urban areas. This distribution of urban and rural facilities resembles South Carolina’s overall population distribution.
One of the 15 facilities repeatedly refused to allow the Protection and Advocacy team to complete a full inspection. Subsequently, on May 21, 2013, the South Carolina Department of Health and Environmental Control conducted a follow-up complaint and general inspection of the facility. The department cited the facility for not allowing Protection and Advocacy to conduct an inspection, lack of appropriately trained staff, numerous maintenance and housekeeping issues, unsecured chemicals and cleaning supplies, foul odors, high air temperatures, and debris and clutter outside the facility.
On July 10, 2013, Protection and Advocacy again attempted to conduct an inspection of the facility. The facility’s administrator refused to permit the Protection and Advocacy team to enter her facility. Protection and Advocacy filed another complaint with the Department of Health and Environmental Control. The Protection and Advocacy team returned to the facility with department staff on August 20, 2013. The administrator initially refused to open the door. However, after the Protection and Advocacy team and the Department of Health and Environmental Control representatives waited outside the facility for 20 minutes, the administrator let the inspectors enter.
Inside the facility, the team found cluttered living areas, filthy floors, and dirty walls with worn paint. Roaches and other insects were in several rooms including a resident bedroom. The administrator reported that she had four residents; the team observed five. The only bathroom for residents to use was located inside a resident bedroom. The bathroom had no toilet paper, hand soap, or paper towels. Residents spent most of their time in the basement, which was down a steep set of stairs covered with dirt and worn carpeting. The basement was dank and musty. Part of the floor was covered with linoleum, which was ripped and torn in several areas. The television in the room had a fuzzy picture. Sofas were torn and stained. The wall had water damage. One resident reported, “I feel like a prisoner here.” This facility was not included in the 2013 report because Protection and Advocacy staff were not able to gain entry until after the release of the report.
Protection and Advocacy’s 2013 study focused on findings from the remaining 14 community residential care facilities in the sample. A total of 83 resident records were reviewed at the 14 facilities. Nearly two‐thirds of the 83 residents reviewed were male. The majority (81 percent) of residents reviewed had a medical diagnosis such as diabetes, hypertension, or asthma, and 76 percent had a psychiatric diagnosis such as schizophrenia, bipolar disorder, or depressive disorder. In addition, 10 percent of the residents had a diagnosis of an intellectual disability, and four residents had a diagnosis of dementia. Two of the 83 residents were blind. More than half (60 percent) of the 83 residents were 55 or older; 31 percent were 35–54; and 9 percent of residents were 35 or younger. The youngest resident interviewed was 24, and the oldest was 84.
What Protection and Advocacy for People with Disabilities Found
The Protection and Advocacy team found widespread deficiencies in many of the community residential care facilities it visited, and in some cases, the problems appeared to present an imminent danger to the health, safety, or well-being of the residents. In most cases, these problems were long standing. In a few facilities, the team noted no problems or minor problems that could be easily corrected.
Fire and Life Safety. Protection and Advocacy found numerous fire and life safety violations, including fire extinguishers that were not appropriately serviced and monitored, broken smoke detectors, and unsecured hazardous cleaning materials. Water temperatures were often high—up to 166 degrees Fahrenheit—or below required minimum temperatures.
In a few facilities, the team observed signs of insect infestation. For example, at one 18-bed facility, a resident pointed to his dresser drawer and said, “There is a roach in there.” The inside of the drawer was covered with roach droppings. The resident did not keep any belongings in the drawer because of the roaches.
Housekeeping, Furnishings, and Maintenance. The majority (71 percent) of the community residential care facilities exhibited widespread deficiencies in housekeeping, furnishings, and maintenance. Some facilities had strong, rancid, and stale odors and bathrooms with strong urine odors. Bathroom walls, floors, and fixtures were dirty, and some were in disrepair. Toilets were not secured to the floor, making the toilets wobble back and forth when used.
Resident bedrooms were dirty. Linens, towels, and blankets were worn and stained. Residents’ mattresses were worn, and some were in need of replacement. Mattress coils could be felt in the worn mattresses, and in one case, the metal coil of the resident’s mattress was sticking straight out of the top of the center of the mattress.
In some facilities furnishings were stained, and some were in disrepair. Some residents could not open their dresser drawers because they were off-track. When one resident pulled his dresser drawer open to show the Protection and Advocacy team his clothing, the drawer fell apart in three pieces in his hands, with his clothing and personal belongings falling onto the dirty floor. The resident explained this was not the first time the drawer had fallen apart like this.
In many facilities, common living areas and bedrooms were dimly lit; light bulbs did not work; dead bugs were found in the light fixtures; and some light fixtures did not contain shields as required by state regulations.
Accessibility. At the majority (86 percent) of the community residential care facilities, residents using wheelchairs, walkers, or other mobility devices or who had difficulty walking would have encountered problems entering and exiting the facility. For example, at one facility, one resident used a wheelchair to ambulate, and two residents used walkers. The ramp leading to the back door of the facility was very narrow and had no handrails. The ramp led to a sliding glass door that entered a resident bedroom. Inside the bedroom, the doorway was blocked by a dresser, bags of food, several cases of soda, and a bed. This was the only accessible entrance to the facility.
Meals and Food Storage. In six community residential care facilities, foods were inappropriately stored, and in five facilities, foods stored in refrigerators and pantries had gone beyond their “best by” date, in some cases by many years. In three facilities, the menu was not posted, and in five facilities, residents’ physician-prescribed diets were not posted as required by state regulations.
The Protection and Advocacy team observed meals during 13 site visits, and at three (23 percent) of these, 13 residents with physician-prescribed special diets (e.g., diabetic or low-salt) received the same meal as other residents. At eight of these 13 facilities, not enough food was available for residents to have seconds at meal time if they wanted. At two facilities, residents reported going to bed hungry because often not enough food was available. At another facility, some residents were hungry at the end of the meal, but not enough food was available for seconds. At still another facility, the lunch meal served was minimally adequate in portion size, and only enough food was left over for the staff. At some facilities the team visited, snacks were not always given to residents. Some refrigerators and freezers lacked thermometers and were dirty with spilled foods.
Medication Administration and Storage. At the majority (78 percent) of the 14 community residential care facilities visited, the Protection and Advocacy team identified problems in medication administration and storage:
- Medication administration records were not signed by staff, making it unclear whether residents had been administered their physician-prescribed medication;
- Physician-prescribed medications were not in stock;
- Medications were not secured as required by state regulations.
The Protection and Advocacy team found that residents were not supervised when taking medications; medications were not labeled correctly; and physician-prescribed creams were not administered.
Resident Rights. Violations of resident rights included residents not having a telephone to use in a private area, staff not treating residents with respect and dignity, windows in common living areas and bedrooms not having curtains or shades for privacy, residents not being able to go into their bedrooms to lie down during the day, and residents reporting being locked out of the facility.
Adaptive and Medical Equipment. At 13 (93 percent) of the 14 community residential care facilities, residents used adaptive or medical equipment. In nine of these, the equipment needed was not available, did not meet the needs of the resident, or was in disrepair.
Activities of Daily Living. At the majority (79 percent) of the community residential care facilities, the Protection and Advocacy team identified problems in residents’ activities of daily living, such as residents not having needed toiletries and wearing stained, ill-fitting clothing and shoes. In nine facilities, residents did not have supplies for dentures, and not all residents had a toothbrush or toothpaste. In seven facilities, not all residents had soap and deodorant.
Recreation. Even though most community residential care facilities posted an activity calendar, the Protection and Advocacy team found the activities on the calendar often did not take place. In fact, in some facilities, the supplies needed for the activities were not in stock or had never been opened. For example, at one facility, the activity board listed an exercise class at 10:00 a.m., chess at 11:00 a.m., and a card game at 1:00 p.m. These activities were never offered to the residents. Another facility listed popcorn night on the schedule, but staff reported that there was no popcorn in stock, and residents reported that they had never had popcorn at the facility. On another date, “movie night” was listed as the activity; the facility had no movies or a DVD player.
Residents’ Personal Needs Allowance. Publicly funded residents receiving optional state supplement payments get a monthly personal needs allowance of either $61 or $81 a month. (The additional $20 is determined by the type of entitlement the resident receives.) Most residents in community residential care facilities receive the standard $61 per month. Residents must use their personal needs allowance to pay for medication copays, medical appointment copays, clothing, toiletries (except soap and toilet paper, which are provided by the facility), recreational activities off-site, snacks, transportation (except to local medical appointments, which is provided by the facility), eyeglasses, and dentures.
An allowance of $61 per month cannot pay for all needed items. As a result, residents of community residential care facilities often do without needed toiletries and even sometimes medications and other medical equipment such as eyeglasses and dentures. In addition, some residents pay nonprofit agencies $39 monthly to manage their funds. These residents are often left with little or no allowance after medication copays.
Americans with Disabilities Act. The Americans with Disabilities Act of 1990 (ADA) and the U.S. Supreme Court’s 1999 decision in Olmstead v. L.C. state that a person with a disability has the right to live in the least restrictive setting that meets the person’s needs and choices. In the community residential care facilities visited, residents were, for the most part, segregated from the communities in which they lived. While they lived in the community, they were not a part of the community.
Many residents in Protection and Advocacy’s sample discussed this segregation and the lack of opportunities to become part of the community. Residents reported a lack of community activities; not having transportation to the movies, stores, or restaurants; not being able to talk on the telephone for more than a couple of minutes; not having the opportunity to work due to lack of transportation; and not having the opportunity to attend church in town and do things like everyone else. One resident said he spends his day sitting on the porch because there is nothing to do. When asked where he would like to go, he simply replied that he wanted to go to his church in town.
Many residents also stated that they wanted to move, not to other congregate settings but to their own apartment or home where they could have their own bedroom and bathroom. Many wanted just to be with their family and friends. Some wanted to have their own belongings and room to store their things. In community residential care facilities, residents receive a closet, a bureau consisting of at least three drawers, and a nightstand to store their personal clothing and belongings. In most cases, residents share the closet with at least one roommate, and in some cases more than two residents share one closet. In one facility, four residents shared a closet.
How Protection and Advocacy Shared Its Findings
Still… No Place to Call Home was widely distributed to elected officials, state agencies, providers, advocacy groups, and media outlets across the state. Articles about the report were published in local and state newspapers. The report also received television news coverage. Protection and Advocacy posted the report on its website and posted photos and a link to the report on its Facebook page.
Protection and Advocacy presented the report’s findings and recommendations directly to the South Carolina Adult Protection Coordinating Council, which was created by the South Carolina General Assembly in 1993 to foster coordination and cooperation among multiple entities involved in the adult protection system. Protection and Advocacy is a member of this council.
Protection and Advocacy’s Team Advocacy Project continues to conduct inspections of community residential care facilities and is scheduled to complete 72 inspections this fiscal year. Since the release of Still… No Place to Call Home, Protection and Advocacy has continued to work with state agencies, organizations, and advocates that represent people with disabilities who live in community residential care facilities to assure that these individuals have a choice of services in the community and that those services are safe and homelike.
Since the release of Still… No Place to Call Home, the South Carolina Department of Health and Environmental Control agreed to publish its inspection reports of community residential care facilities online. In July 2013 Protection and Advocacy began posting each facility’s inspection reports on Protection and Advocacy’s website to enable placement agencies, families, and potential community residential care facility residents to learn valuable information about a facility prior to making a placement decision.
The South Carolina Department of Health and Human Services implemented a program called “optional supplemental care for assisted living programs.” The program is a voluntary community residential care facility program. Facilities that enroll in optional supplemental care for assisted living programs will receive a higher monthly rate from the state than facilities that are not enrolled. Community residential care facilities not enrolled currently receive $1,232 per month for residents who are publicly funded. Enrolled facilities will receive a minimum of $1,500 per month per resident. Optional supplemental care for assisted living programs will require facilities to promote and advance high-quality, evidence-based, person-centered care and services for community residential care facility residents. The program will institute a much-needed procedure to identify inappropriately placed residents in community residential care facilities and prevent future inappropriate placements.
The Adult Protection Coordinating Council established a subcommittee to address the issues found in Still… No Place to Call Home. Members of the subcommittee represent government agencies, private providers, and Protection and Advocacy.
Protection and Advocacy’s Team Advocacy Project continues to conduct inspections of community residential care facilities and is scheduled to complete 72 inspections this fiscal year.
More than 20 years have passed since the passage of the ADA, and 14 years have passed since the Olmstead decision. The time is long past for people with disabilities to have the opportunity to live in the community of their choice and for the services they choose to be safe and homelike. People with disabilities have every right to have a place to call home.