Managing the care needs of low-income board-and-care home residents: A process of negotiating risks. Once an illegally unlicensed personal care home is identified, it is tracked at the local level to see if it has moved, or, in the case of closure, if it has reopened. Other SMEs reported that efforts to discharge or divert residents from nursing facilities to community-based settings led to greater use of licensed RCFs and noted instances in which residents who exhausted their private funds might have no options other than unlicensed residential care homes. Lists of both known illegal and potentially (identified but not yet confirmed) illegal operations are maintained by APS and the local ombudsman who lead the team. If you want to see if a certain group home is licensed, please click here. Presumably, this led to an increase in need for LTSS for these populations. This report was prepared under contract #HHSP23320100021WI between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and Research Triangle Institute. @XF( &F{$&LEdOITXm Office of the Assistant Secretary for Planning and Evaluation, Printer Friendly Version in PDF Format (81 PDF pages). As noted in Section 4.1, states use a variety of definitions or criteria that allow some homes to operate legally without a license. Our state services support residents, businesses, and visitors to the Great Lakes state. In contrast, a key informant stated that complaints of physical and mental abuse are the issues that most often draw attention to unlicensed care homes. In addition to the aging population, many key informants agreed that the lack of affordable supportive housing options for individuals with a mental health diagnosis is also a concern for Allegheny County and surrounding counties. Several key informants mentioned that hospital discharge planners sometimes discharge patients to unlicensed care homes (described in more detail in Section 4), and as such they might be a potential source for compiling a list of these homes. In Arizona, a bill to strengthen the elder abuse and fraud laws failed to pass again after being introduced in three previous sessions. To address unlicensed care homes, states commonly use a strategy that includes penalty systems that fine operators as a way to try and close illegally unlicensed care homes. Retrieved from http://www.miamiherald.com. ", 3.5.5. A local ombudsman in Maryland stated that they had no authority to inspect an unlicensed home and therefore did not have reliable knowledge about whether unlicensed care homes exist, how many individuals are living in such homes or what level of care or assistance those residents needed (Tobia, 2014). Nevada stated that no interagency procedures were in place to handle complaints about unlicensed board and care homes in a timely and efficient manner (Ryan, personal communication). Though it is outside the time period of our environmental scan, the case study describes how regulatory requirements meant for large assisted living facilities are too stringent and expensive for small residential care homes. State and Local Policies Related to the Supply of and Demand for Unlicensed Care Homes. In many cases, the cost of care in other settings is too high for what individuals with severe and persistent mental illness can able to afford on their SSI stipend. Research could also examine whether and how federal or state policies might affect the resident mix in unlicensed care homes. According to the key informant, these individuals were given one-way bus tickets out of the city under the stipulation that they never return. In Allegheny County we interviewed key informants from APS, and local ombudsmen and placement coordinators from the local Area Agency on Aging (AAA) who work directly with licensed and unlicensed personal care homes, as well as other staff from a local disability advocacy agency and a local fire department. Although these complaint systems are not specifically designed to identify and track unlicensed care homes, some states use the complaint systems in this way. In North Carolina, facilities providing or arranging for housing, food service, and 24-hour scheduled and unscheduled personal care services to two or more unrelated adults must be licensed as an adult care home or a group home. Abuse, neglect, and financial exploitation of these vulnerable residents appear common. Populations in Unlicensed Care Homes. The same held true, with one exception (Georgia), for the top ten states with the greatest increase in HCBS spending since 2010: Virginia, Ohio, Maine, Rhode Island, Alabama, Tennessee, Georgia, New Hampshire, Massachusetts, and Delaware. Interview discussions often touched on the question of how best to identify illegally unlicensed care homes, and key informants noted this as a major challenge. Please note a group home for adults may require a Home for the Aged or Adult Foster Care Home license if the level of care provided at the facility meets the licensing requirements of one of these license types, see the Department of Licensing & Regulatory Affairs, Bureau of Community & Health Systems. However, key informants emphasized that in some cases,the residents become tethered to the operators through financial exploitation and emotional manipulation, and as a result are unable to leave these abusive and exploitative situations. x][o~ ^/o{)u4M!"KH336jTp87O[Gdz>;OW~|mZ~Nf/OeT61J4IX>b]}X One key informant shared a specific case of a repeat offender that operates an unlicensed adult care home out of a double-wide trailer. Additionally, several SMEs and key informants noted that in many cases unlicensed homes are the only option, other than homeless shelters or living on the streets, for some of these residents. To accomplish this we conducted an environmental scan, including a review of the peer-reviewed and grey literature and interviews with SMEs. Key informants recommended more proactive strategies for identifying unlicensed care homes, such as tracking individuals' benefits (e.g., SSI) to unlicensed care homes, obtaining lists of unlicensed care homes from health care and advocacy organizations that refer individuals to them, and utilizing owners of licensed or legally unlicensed facilities as a source of information about illegally unlicensed care homes. We heard stories from SMEs and site visit informants of operators recruiting vulnerable individuals from psychiatric wards of hospitals, from acute care hospitals through the hospital discharge planners, from homeless shelters, and directly from the street, similar to those we found in media reports (see Appendix B for details). None of these approaches or strategies completely addresses the concern about providing a safe environment and quality services to the vulnerable individuals being served in unlicensed care homes. These unlicensed care homes are referred to by several different names in different states, such as "board and care homes," "boarding homes," and "adult care homes." However, as in some other states, APS in Pennsylvania can act on referrals of abuse for elderly residents (age 60+). [13] 3 Key informants also mentioned other resident health concerns including neglect, lack of water, malnourishment, and bed sores or pressure ulcers resulting from inadequate care. The enactment of state laws or penalties and fines related to the operation of illegally unlicensed care homes is a strategy that states can use to address illegal unlicensed care homes. What concerns are there about the quality of care and safety in unlicensed care homes? Interagency and Multidisciplinary Teams. Some key informants reported that the living conditions in these places can be subpar. But several judges in metro Detroit like to appoint Public Administrators as professional guardians for adults who are considered legally incapacitated.. At least two states have demonstrated that coordinated efforts can effect changes to laws and policies and create at least initial disincentives or barriers to the operation of illegally unlicensed care homes. Multiple key informants also spoke about the lack of affordable housing in Allegheny County. Few peer-reviewed articles have been published on unlicensed care homes, but numerous media reports were examined. While we visited only three communities, the concerns articulated by the case study respondents were echoed by SMEs from other areas of the country and are consistent with the literature and media reports in the environmental scan. In some states, APS has very limited responsibility and involvement. Although the residents who were moved out of this hospital may have been relocated to licensed facilities when the hospital closed, the fact that such institutional settings are no longer an available option may have encouraged unlicensed care homes to open. One key informant described the selling of residents from an unlicensed care facility located in a house. Using the 2012 annual Medicaid LTSS expenditures report produced by Truven, we identified the ten states that spent the highest percentage of their LTSS expenditures on HCBS and the ten that spent the least. Perkins, M., Ball, M., Whittington, F., & Combs, B. Two key informants noted that they only see the worst cases of illegally unlicensed personal care homes, so they could not offer examples of adequate or good care that may occur in those they do not investigate. The environmental scan and SME interviews informed state selection for site visits. An operator with this population mix can avoid licensure because each agency is only responsible for the residents that are enrolled in their program or waiver. A 2010 report from the Pennsylvania BHSL noted that enforcement actions against illegal personal care homes had increased from four homes in 2009 to 27 in 2010 (most were located in the Philadelphia area). Key informants from Georgia and Pennsylvania shared examples of efforts to increase awareness of unlicensed care homes through education or marketing for the general public or the agencies they involve in addressing unlicensed care homes. SME interviews primarily focused on federal and state policies that may impact the prevalence of unlicensed care homes. (2015). Regardless of what they are called, this study focuses on places that provide room and board and sometimes provide personal care to two or more unrelated individuals, but whose operators are not licensed or certified by the state. The following section presents individual research topics and identifies the related questions that might guide future research on unlicensed residential care homes. Key informants described instances of operators making money off of vulnerable residents in a variety of ways that involved theft from residents and theft from government programs. The DSP may only assist individuals with administration of medications that have been ordered and prescribed by a person licensed to do so by the Department of Licensing and Regulation (i.e., Doctor, Dentist, or Nurse Practitioner.) Multiple key informants suggested that, as a result, these residents are primarily being served by illegally unlicensed personal care homes. Thus, we lack information about unlicensed care homes in moststates, and even in our study states there were no reliable counts of illegal unlicensed care homes. Michigan Department of Licensing and Regulatory Affairs Bureau of Community and Health Systems P.O. However, a few states (such as Georgia and Texas) provide those supplements only to residents in residential care homes certified to offer services covered by Medicaid. (2004). One key informant shared that, as part of such a campaign in 2012, advertisements were placed in metropolitan areas warning the public against placing people in illegally unlicensed personal care homes. In Connecticut, the Department of Developmental Services (formerly the Department of Mental Retardation) handles licensing for group homes for the mentally disabled. The same message was also sent to hospital discharge planners and to rehabilitation discharge planners. Operators seizing the residents' food stamps and selling them for cash. SMEs and key informants consistently noted that many low-income individuals cannot afford licensed facilities, which makes the less expensive unlicensed care home an attractive option, and thus contributes to the existence of unlicensed care homes. The Allegheny County PCRR has sent letters to hospitals and their discharge planners informing them about known illegally unlicensed personal care homes to which they should not discharge patients; however, according to two key informants, discharges to these homes have continued. Desperate, Plummers family hired an attorney. The following are some examples of financial exploitation depicted during interviews; these examples are discussed at greater detail below: Operators of unlicensed care homes collecting the residents' medications and selling the medications on the street for cash. The aging housing stock in Allegheny County was also a cause of concern for a few key informants, as it relates to the number of pre-existing buildings that cannot meet the state regulatory building code requirements for licensed personal care homes. d8 krDlxS^ s P,R^RDS=52oXj]]>b4M|{4q 4OH,kaG/ 4+P}COWz`)29z+QO i#.i[Yuv42 A::E%~wA/N^H[of=8"v~=Gk` *Xl?( J[J#'I@hSh 8 =;z+MZ>7x0mF D7& They indicated that they are unaware of any assessment of need related to licensed mental health group homes in the state. Ombudsmen reported increasing numbers of RCFs operating without a license in both Maryland and Nevada. Care must be provided in a private home where the licensee is a permanent resident and household member. Ten states (Delaware, Georgia, Louisiana, New Jersey, New Mexico, North Carolina, Oklahoma, Rhode Island, South Carolina, and Washington) require residential care homes to be licensed if they have at least two beds. One key informant reported that during the investigation of this home, it also was discovered that the operator was taking the residents' food stamps. Many key informants noted that regulatory loopholes provided potential ways that operators of illegally unlicensed personal care homes can persist and evade licensure. Thirty states require residential care homes to be licensed if they have at least one bed.7 Massachusetts exempts small private-pay homes from licensure. From 2008 to 2013, Pennsylvania reported a stable trend of investigating about ten illegally unlicensed care homes per year with the exception of 2010 when they investigated 27 cases, about three times more than in other years.6. Because these homes are legally unlicensed, the state licensure office has no jurisdiction to monitor them, but APS may receive complaints about them. The fact that four people should have been receiving personal care services made the home eligible for licensure as a residential care home--not the fact that three people were receiving the services (which would make it under the legal limit). The issue of financial exploitation is described in detail in Section 3.3.2. Findings from the interviews suggest that the majority of unlicensed care home residents in the metro Atlanta area have severe and persistent mental illness and are highly vulnerable to exploitation. Key informants were divided in their opinions on the motivations for operating illegally unlicensed personal care homes. Media and state reports have highlighted homes operating deliberately illegally--that is, they are avoiding required licensure or certification (Tobia, 2014; Georgia Association of Chiefs of Police Ad Hoc Committee on At-Risk Adult Abuse, Neglect & Exploitation, 2013). Each interview began with a general question to ascertain what the interviewee knew about unlicensed care homes. Vulnerable adults being put into unlicensed group homes. In Illinois, there are several categories of adult group homes: Shared Housing Establishment (SHE) - Residence for 16 persons, at least 80% of whom are age 55 or older. In either case, while states regulate and provide some level of monitoring and oversight of licensed care homes, state and local oversight of unlicensed care homes can be minimal or non-existent, and these facilities provide questionable care and services. The State of Michigan does not license assisted living . Estimates of the number of unlicensed RCFs, as detailed in this report, were in the hundreds in two states: one state estimated more than 200 unlicensed homes in contrast to their 400 licensed facilities; and the other state estimated more than several hundred unlicensed homes but noted there was no reliable count. Referral and Placement Agencies and Discharge Planners. We conducted an environmental scan primarily focused on information spanning a five year period from 2009 through 2014. { J\5s-Qy&`DA!o+Z46sA. Some trawl for residents, picking residents up off the street, from homeless shelters, and from hospitals, and routinely shift residents from one facility to another in order to keep their occupancy rates high. Future research could be conducted to describe the nature of ombudsman involvement in unlicensed care homes and how it differs across states. Thus, although our findings consistently highlighted concerns about safety and quality, we cannot assess the generalizability of these findings and concerns. Ombudsmen program does not extend to unlicensed facilities (Hawes & Kimbell, 2010). Interview results indicate that the majority of unlicensed care homes investigated by state officials and local APS agencies involve situations in which residents are not being cared for properly. One of the points made by key informants is that states have very few, if any, strategies to easily identify unlicensed care homes. However, even with those limitations, we know that in the communities we visited, there were significant health and safety concerns for residents, as well as concerns about financial exploitation and government fraud. Owners of current small licensed personal care homes are also potential sources of information; they will be able to fully describe the monetary costs associated with licensure, and these costs appear to be one reason why some people choose to operate illegally. Health, Safety, and Sanitary Conditions. They speculated that there may not be enough licensed mental health group homes available to care for persons with mental illness, and that unlicensed group homes can potentially fill that gap. These complaints may be made to the police, APS, ombudsmen, and the Department of Community Health, HFR Division. Multiple SMEs and key informants suggested following or tracking these benefits as a way to identify individuals in unlicensed care homes. These findings highlight a set of potentially serious problems and issues. The State of Michigan does not license assisted living or independent living facilities. Some state have too few inspectors to detect and investigate allegations about unlicensed homes and too little time and manpower to bring a prosecutable case to the AG's office. Texas: A 2007 media report, outside the scope of this review but important to mention, notes that city officials in Dallas estimated that there were at least 350 unlicensed, unregulated board and care homes that house 2,500 people across the city, and likely there were more than that (Hancock, 2007). Multiple key informants spoke about a reduction in the number of Dom Care homes in the state and how this reduction may also give rise to illegally unlicensed personal care homes. With one exception--Georgia--the same held true for the ten states with the greatest increase in HCBS spending since 2010: Virginia, Ohio, Maine, Rhode Island, Alabama, Tennessee, Georgia, New Hampshire, Massachusetts, and Delaware. Findings from our limited number of interviews with site visit key informants and SMEs are consistent with the information found during the environmental scan. Additional key informants for the site visit interviews were selected based on information provided by the SMEs or what we learned from the environmental scan. Social Security Administration. The reporters described cases of abuse in which residents were being beaten and burned, locked in basements or other rooms, given buckets for toilets, and had their benefit checks taken from them. Key informants expressed a desire for future research that helps to categorize the necessary organizations and the number of personnel hours needed from each organization at each phase of the processes to identify, investigate, and close unlicensed homes; determine the optimal tactics to effectively implement investigation and closure; and develop a safe and seamless relocation and follow-up plan for residents. AS800397501. During interviews, informants talked about situations in which the operators of unlicensed care homes continue to be the representative payee and continue collecting the SSI checks of residents even after the resident moved out of home. Miami Herald. It is important to note that we do not know whether the types of financial exploitation and abuse described by the SMEs and key informants occur in both legally and illegally unlicensed care homes, or how commonplace they are. Informants consistently emphasized the critical need for collaboration between multiple agencies, including law enforcement, APS, ombudsmen, the Department of Behavioral Health, and HFR, in order to address the potentially unsafe environments in unlicensed care homes, ensure the needs of the residents are met, address the criminal acts of the operators, and attend to the buildings themselves. While no comprehensive nationwide list of unlicensed care homes exists, the environmental scan identified one state (Florida) and one city (Houston, Texas) that maintain listings of unlicensed care homes. They described this as an example of operators running unlicensed care homes strictly for the money. With regard to recruiting residents from hospitals, we also heard of unlicensed care home operators receiving payments of up to a month's fees from hospitals anxious to discharge the residents to free up hospital beds. Frustrations continue among licensure agencies and advocates with unlicensed care homes, and residents are largely unprotected by licensing agencies (Hawes & Kimbell, 2010). R Our examination of the Medicaid Fraud Control Unit reports (2009-2013) showed that only a couple cases were reported to the media; the rest had not made the news. An Online Resource for Skilled Immigrants. Estimates of the prevalence of unlicensed residential care homes are lacking for most states. Media reports described operators that continued to operate after their licenses expired or were revoked. The primary concern expressed about the unlicensed homes that were otherwise safewas that they might not be able to provide the level of care and services needed by the residents (e.g., medication supervision for residents with severe and persistent mental illness). However, unlicensed care homes, which provide room and board and some level of personal care services, but are notlicensed by the state, fill some of the gaps in the availability of housing and services for these populations. Illinois: A story released on the This American Life radio podcast described a scam where individuals with substance use disorders were sent from Puerto Rico to supposed rehabilitation centers in Chicago where they were to be provided with housing, food and counseling services, only to find themselves in crowded, unlicensed rehabilitation centers, their passports and other identifying information taken from them. In 2012, the state mandated that large adult care homes (seven or more beds) housing only individuals with mental illness had to close because they were considered institutional settings. Although we heard about a range of conditions in illegally unlicensed homes, including neglect, abuse, and financial exploitation, it is unclear whether this is the norm or whether the findings are skewed because of the types of key informants we interviewed. <>/Metadata 112 0 R/ViewerPreferences 113 0 R>> Key informants included representatives from several agencies, including the state Healthcare Facility Regulation (HFR) and APS offices, local fire departments, local and state law enforcement and ombudsmen, and a church-affiliated provider of day services used by individuals who live in unlicensed care homes. Interview results indicate that police may also be helpful in identifying unlicensed care homes, but the extent of that help may vary from state to state and across communities within states. We utilized the information obtained in the literature review, in addition to our own expertise, that of our consultant, as well as that of U.S. Department of Health and Human Services (HHS) Office of the Assistant Secretary for Planning and Evaluation (ASPE) and the HHS Administration for Community Living (ACL) staff familiar with unlicensed care homes, to develop an initial listing of SMEs to interview. That's what they're doing, targeting individuals with cognitive impairment.". Those are just a few of the guardianship problems 7 Investigator Heather Catallo has . While experts may speculate on changing market dynamics, we do not have a reliable estimate of the unlicensed care home market prior to these policies taking effect, so we do not know what the market would have been without such policies. Several examples of unlicensed personal care homes were described by key informants during the site visit. In 2005, Pennsylvania state regulations for personal care homes were changed, reducing the minimum number of residents a personal care home could serve from seven to four. He recommends additional research, enhanced coordination and cooperation among local agencies, education for first responders about unlicensed group homes and how to identify at-risk individuals, and stronger advocacy for risk reduction strategies to prevent fires that involve large loss of life (Tobia, 2014). When discovered, investigators said, 37 people were living . Leslie was arrested on multiple counts of abuse and. One former fire department battalion chief reported that the elderly living in unlicensed residential care homes are hidden from the view of public health agencies, social service agencies, and ombudsman programs --the entities that generally protect and advocate for older people and individuals with disabilities. As discussed earlier, Pennsylvania is a state that legally allows unlicensed residential care homes, if they serve three or fewer individuals. In one state, the AG only received nine cases in the entire year; in another state they handled only 2-3 cases a year. Most of the literature or media reports were not specific about the types of residents served in unlicensed residential care. In addition, investigations by Georgia law enforcement officials indicated that there is considerable fraud with respect to SSI, Social Security, residents' personal needs allowances, Medicare and Medicaid, and the food stamp program. Dirt was evident over the walls, floor and stairway.. Very little discussion centered on improving the quality of unlicensed care homes. Another interviewee suggested that it is becoming more difficult to recruit individuals to be Dom Care operators because of the competing demands on their time. Arizona Department of Health Services. Hawes, C., & Kimbell, A.M. (2010). 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