State Web sites contain a range of useful tools—searchable databases to help consumers locate assisted living residences, consumer guides or checklists to inform consumers about the issues and questions they might ask while searching for an assisted living residence, standard disclosure forms, and survey and complaint findings.
State Web sites were reviewed to determine the extent of the information posted on each site. Licensing regulations were posted on 48 State Web sites, either on the licensing agency's Web site or the site of the Secretary of State. Other information was grouped according to the primary user: providers or consumers. Consumer information includes consumer guides, lists of facilities, and survey or complaint reports. Provider information varied widely.
Forty-two States post information about licensed facilities. Some sites include information in a word or PDF file containing the name, address, and phone number of the facility. The number of units and the date of the license are sometimes included. Other States manage a database that can be searched State-wide, by county, or by city/town.
Twelve States post survey or complaint findings, although Iowa has discontinued its postings due to staffing shortages. Licensing agencies do provide a copy of recent surveys to consumers upon request, sometimes for a fee.
Colorado is one of 10 States that post results from surveys and complaint investigations on their Web sites. One link leads consumers to basic information about residences, including name of the residence, location, and a contact person. A second link leads to more detailed residence profiles. Consumers select the city or county and the payment options (private pay only, Medicaid only, or both) that they want to search. The results list all residences meeting the search criteria. Clicking on a specific residence shows the administrator's name, the licensed capacity, the owner's name and type of ownership, the date of the current ownership, and the phone number for the ombudsman service.
The search results also include links to occurrence (incident) investigative reports and complaints. A dialogue box lists the date of any occurrences or complaints. Users can click on the date to access further details. Occurrence reports describe the date of the incident, a description of the incident, actions taken by the residence, the oversight authority's findings, and comments from the residence. The information is posted to the Web site within a few weeks of date of the occurrence.
The occurrence Web page links to an occurrence report manual, forms for providers to complete, and a note to consumers that States:
"Health facilities (such as long-term care facilities and acute-care hospitals) are required by statute to report certain types of occurrences to the Department of Public Health and Environment. When attempting to compare facilities in terms of quality-of-care and safety, consumers must keep in mind that the reporting of occurrences by a given facility does not necessarily mean that it has failed to act appropriately or is experiencing negative trends in delivery of healthcare. Instead, facilities that appear to have a higher number of reported occurrences may simply be doing a better job of meeting their obligation to report those occurrences as required.Occurrences are a snapshot. They are not the entire story.
Examples of reportable occurrences include diverted drugs, physical abuse, misappropriation of property, missing persons, and equipment misuse. The Department of Public Health and Environment reviews all occurrences for deficient practices and to ensure appropriate action was taken by the reporting facility. Consumers are encouraged to review a facility's occurrence history in order to evaluate how it responds to certain types of events, keeping in mind that the occurrence reports do not reflect such factors as facility size or the complexity of healthcare needs of its patients."9
The Texas Department of Aging and Disability Services (DADS) developed a Web site to help consumers search for several types of service settings.10 The site lists residential, home-based, and adult day care service options with brief descriptions of the type of person who might find each service option appropriate. The service options are linked to a search function that lists facilities by county, city, area code, or ZIP code.
The Web page recommends that consumers visit providers and contact the ombudsman or the DADS information hotline for information about specific providers. Consumers may E-mail the information hotline by clicking on the link. The ombudsman link opens a page listing all the Area Agencies on Aging (AAA) in the State with the name, phone number and E-mail address of the ombudsman and benefits counselor in the AAA.
Information available on each facility includes:
The database lists the number of health and life safety code deficiencies for the facility compared with the State-wide average, the date of the deficiency, and a description of the deficiency.
The Florida Department of Elder Affairs (DEA) has responsibility for developing and promulgating regulations governing assisted living residences. The State's Agency for Health Care Administration is responsible for issuing licenses, inspections, and oversight.
DEA developed an extensive Web site to assist consumers, developers, and operators.11 Design and operation of the Web site was supported by a grant from the Coming Home Project, a national affordable assisted living program funded by the Robert Wood Johnson Foundation and administered by the National Cooperative Bank Development Corporation. The Web site was developed primarily for operators and developers, but it is also useful to any consumer or family member.
The consumer section of the Florida Web site explains assisted living and adult family care homes. The site describes several levels of licensure: a basic license and three types of specialty licenses that are available—extended congregate care, limited nursing services, and limited mental health services—and the services available with each license.
The find-a-facility Web page allows consumers to search for a licensed assisted living facility or adult family care home by location, price, and available services. This section has six screens that allow consumers to search for private-pay or subsidized residences within five price ranges (under $800, $800-$1,200, $1,200-$1,600, $1,600-$2,000 and over $2,000 a month).
The page listing preferences for units allows searching by private unit, double/multiple occupancy unit, apartments with kitchens, full furnished, private bathrooms, pets, and dementia units. Special needs that may be required by the consumer can also be included—catheter care, diabetes, stage 1 or 2 pressure sores, vision and hearing impairments, wheel chair bound, hospice, and developmental disability services. The next page lists the services the person might need.
Once the form is completed, all facilities in the selected geographic area that meet the person's requirements are located with the name, address, phone, E-mail, and other information that corresponds to the consumer's input.
The consumer resources page has links to State and local agencies, consumer organizations, Alzheimer's organizations, toll-free complaint numbers, and other sites related to assisted living and long-term care.
The operations section of the site has links to licensing information, specialty licenses, licensing regulations, minimum staffing requirements, training requirements, liability insurance requirements, and all the forms needed to operate a residence.
Trainers are organized by the type of training they need (e.g., core training for administrators or managers and staff in-service training in dementia care, assistance with medications, first aid/CPR, HIV/AIDS, and nutrition and food services). The resources section contains study guides for staff on assisting with self-administered medications and providing extended congregate care services.
Valuable information can be provided through consumer guides and disclosure statements to help consumers select a facility. Guides are optional tools prepared by States and other organizations that describe multiple features of assisted living and provide structure to the information that should be obtained, what consumers should look for, and how to compare facilities. Disclosure statements help consumers understand a range of issues that vary by facility within a State.
Consumer guides or checklists were found on Web sites in 14 States. The tools address common topic areas, although the guides use different terms to describe the topic areas (Table 5). Many of the guides present questions that consumers and/or family members should ask about facilities they are considering.
Each guide was reviewed, and the areas presented were adjusted based on the intent of the questions. Listed below are the topics typically included in the guides, along with the number of guides that address each topic.
| Physical environment/units/space | 13 | Medication and health services | 7 |
| Activities/social/recreational | 13 | Atmosphere/surroundings | 9 |
| Meals/dining | 12 | Other | 5 |
| Services | 11 | Care plan | 3 |
| Resident agreement/contract | 8 | Medicaid policy | 4 |
| Costs/financing | 9 | Transportation | 4 |
| Staff | 10 | Admission/discharge criteria | 4 |
| Licensing status | 7 | Communication | 2 |
Physical environment. The guides include questions that focus on the general appearance of the building and common areas, as well as issues about individual units. Other issues include privacy, the policy regarding pets, wheelchair accessibility, furnishings, call systems, and evacuation procedures. Some of the questions ask the resident to note their observations. Colorado includes a section that reminds consumers to observe staff, meals, the kitchen, and general cleanliness.
Activities/social/recreational. Questions in this area deal with the type, frequency, and schedule of activities; the availability of transportation to participate in scheduled activities; whether residents are involved in deciding which activities will be planned; and whether religious and spiritual activities are available.
Meals/dining. Most guides include questions about meal times, the appearance of the meals, and if snacks and special diets are available between meals. New Jersey's guide suggests asking whether dining room menus vary from day to day and meal to meal. May a resident request special foods? Are special diets accommodated? Are private dining areas available? May residents eat meals in their units, and is there an additional charge? Can meals be provided at a time a resident would like, or are there set times for meals? Can residents have alcoholic beverages?
Colorado and Washington suggest that consumers ask whether cultural or ethnic preferences are considered. Are residents involved in menu planning? Can residents help with meal preparation and have access to the kitchen? Are extra helpings and substitutions available?
Florida's brochure suggests asking if there is a package that allows consumers to pay only for lunch and dinner if they prefer to have a light breakfast in their unit. Is there much choice in when a person can have breakfast, lunch or dinner, or are these meals served at the same time every day? If the resident likes to sleep late, are things like coffee, juice and muffins available later? Are there special seating arrangements, or can residents sit where they want in the dining room? Do the residents eat at the same time or in shifts? Do the residents eat in one large dining room, or are there several dining rooms that serve different groups in the facility?
The brochure developed in Washington includes questions about whether the consumer feels the food is pleasing, nutritious, adequate, and attractively served.
Services. These questions describe the services provided by the facility or the needs met by the services. States that offer brochure-style assistance describe the services that are provided. Other guides address the facility's response to changing needs and how schedules are tailored to the preferences of residents. Oregon's brochure asks if the facility can accommodate two-person transfers and whether services are available to consumers with terminal conditions.
Resident agreement/contract. Questions in this area vary widely. Some advise that consumers read the agreement closely and consult with others before signing. Kentucky lists issues that are required to be included in the agreement. Many of the questions dealing with the services available and their costs are found in the agreement.
Costs and financing. These questions often address information that is available in the resident agreement or contract. In addition to the basic rate, consumes should ask about changes in the rates, services available at an additional charge, and refund policies.
Staffing. Consumers are prompted to observe the staff's appearance and how they interact with residents. They should ask who will be providing which services and about staffing patterns and ratios, turnover, and credentials of managers and direct care staff. By observing residents, consumers may learn about the quality of care provided by the staff. Washington's guide asks how long the administrator has been in place at the facility.
Licensing status. Guides in six States suggest making sure the facility is correctly licensed. Arizona asks if the facility is in good standing. Florida and Maryland issue licenses based on level of care or specialty, and the questions focus on the specific care provided by the facility.
Medication and health services. Five guides include questions about assistance with medications and health services such as whether a nurse is available, how will access to health providers be supported, and responsibility for filling prescriptions.
Atmosphere/surroundings. Questions in this area address the location, décor, and general "feel" of the facility based on how residents and visitors are treated by staff.
Other. Three guides include questions in areas that did not fall into the above categories. Maryland's guide includes questions about special care units, safety, emergencies, and consumer choice. Wisconsin asks about a resident's bill of rights, whether complaints were filed against the facility and how they were resolved, and whether the State regulations are available for review.
Care plan. A few consumer guides ask about the process for developing a care plan, whether family members or physicians are also involved, and how often the plans are updated.
Medicaid. The Medicaid program covers services in assisted living in most States.12 Consumers with limited income and resources need to know whether the facility participates in Medicaid, and if not, what will happen when they exhaust their resources. Guides in three States suggest asking about the facility's participation in Medicaid.
Transportation. Maryland's consumer guide suggests that consumers ask whether transportation is provided, how often, for what purposes, and whether it is wheelchair accessible.
Admission/discharge criteria. Questions in two guides address the criteria facilities use to determine whether they can meet the resident's needs, when a consumer may be discharged, the process for moving, and appeal rights.
Communication. A few guides include a section on communication. The questions in this area focus on the relationships between staff and residents, whether the facility informs family members and physicians when an event occurs, and access to a telephone.
The guides use different formats to help consumers. Some use simple checklists. Florida's guide presents information in a question and answer format with work sheets that consumers can use to compile and compare information about specific facilities.
The worksheet lists a series of questions for administrators and staff that address special licenses held by the residence; type of units available (private units, private bath/shower, grab bars, raised toilets, roll-in shower, emergency alerts system, heating/air conditioning controls, kitchen or refrigerator); type of staff available or arranged (registered nurse, social worker, beautician/barber, home health, physical therapist, podiatrist, physician, pharmacist, volunteers); food menu and dining arrangements; services included in the monthly rate; rules; and activities and transportation.
The worksheet also has questions to be asked of residents about the environment, staff, food, and activities. The worksheet has space for the consumer to list the advantages and disadvantages of the residence and to rate each residence from excellent to poor.
Maryland's guide, Assisted Living in Maryland: What You Need to Know, was developed jointly by a number of State agencies and private organizations, including the Maryland Attorney General's Office, Maryland Department of Aging, Maryland Department of Health and Mental Hygiene, Maryland Department of Human Resources, the Legal Aid Bureau, Inc., Assisted Living Project, the Maryland State Bar Association, University of Maryland School of Law, and the Law and Health Care Program.13
This 73-page document has chapters that include an introduction to assisted living; choosing an assisted living provider; what will it cost and how to pay for assisted living services; what you need to know before you sign a contract; your rights under the law; how to complain when quality of care is lacking; enabling others to make health care and financial decisions for you; alternatives to assisted living; and where to get help.
The New Jersey Department of Health and Senior Services worked with staff from State associations, State licensing, and home- and community-based services divisions and providers to design their checklist for assisted living in New Jersey. In addition to the Web site, the information is also available from public libraries and from county organizations that serve as the entry point for long-term care services.
The checklist guides a consumer through an on-site visit to a residence. It starts with the impressions formed during a visit: the atmosphere and appearance of the building, the way visitors are greeted by staff, and interactions between residents and between residents and staff. The physical features—hallways, doorways, lighting, floors, shelving—are covered next.
The guide notes that consumers are likely to meet with the marketing staff or manager after the tour to talk about monthly costs, payment policies, and other items that are included in the resident agreement. The other sections address medications, health care services, support services, individual unit features, social and recreational activities, and dining.
Oregon's Consumer Guide is organized by topic with a discussion of each topic followed by "considerations," which are questions the consumer should ask before making a decision. The table of contents lists the following topics:
The brochure and Web copy developed by the Washington State Aging and Disability Services Administration outlines six steps to obtaining the right information about assisted living residences:
Pennsylvania's Web-based consumer guide explains the services provided by personal care homes, where to find information about homes, and what to look for when visiting a home. Consumers are encouraged to visit during meal times, eat with the residents, and observe the activities and opportunities for socialization, including local senior centers and other locations.
Consumers are also urged to review the resident contract and the information that should be included. Consumers are advised to consider the amount of space in the unit including closets, temperature of the units, the availability of fans or air conditioning, the location of the unit, and safety features. Finally, the guide recommends talking to the administrator or operator of the home to assess their approach to and interaction with residents.
A 1999 General Accounting Office study of assisted living facilities in four States found that facilities usually provide information about the services they provide but do not provide information about discharge criteria, staff training and qualifications, services that are not available, grievance procedures, and medication policies. The GAO report concluded that the need to provide adequate information to prospective and current residents is a major issue that requires additional oversight.13 This type of information may be included in a disclosure statement from the facility.
States tend to require disclosure statements for facilities that serve residents with dementia. Twenty-seven States have disclosure requirements for facilities that advertise themselves as operating special care facilities or units or providing care for people with Alzheimer's disease or other dementias. These facilities are required to describe in writing how they are different from other facilities. The regulations may require a description of the philosophy of care, admission/ discharge criteria, the process for arranging a discharge, services covered and the cost of care, special activities that are available, and differences in the environment.14
Disclosure forms are available online in New Hampshire, Oregon, Texas, and Washington. Three forms include sections on staffing patterns. The form in New Hampshire has a checklist for staff, including the number of on-duty staff that are on-site and on call, the number of licensed nurses, personal care attendants, licensed nursing assistants, building maintenance, and other staff.
New Hampshire's form is brief (2 pages) and summarizes information that is included in the resident agreement. The form has information about the basic rate, the services included (personal assistance, laundry, housekeeping and meals, unit amenities, staff coverage, transportation, and activities), and services that are not included in the basic rate.
Oregon's form contains a matrix for the number of direct care staff, medication aides, universal workers, activity workers, and other workers on each shift. Texas has a similar matrix for full-time and part-time staff per shift.
The form in Oregon addresses five areas: services, deposits and fees, medication administration, staffing patterns, and discharge/transfer. The services section lists a range of services with check boxes for the facility to indicate whether the service is included in the basic rate, available at an extra cost, arranged with outside providers, or not available.
Washington's form has a series of 18 categories with check boxes and space for a narrative. Each section describes the licensing requirements as appropriate. For example, the section on assistance with daily tasks notes that boarding homes are not required to provide assistance with ADLs, but those that do provide such assistance must provide a minimum level of assistance.
The facility checks whether or not they provide assistance with ADLs. There is a separate box for each ADL: bathing, toileting, transferring, personal hygiene, eating, dressing, and mobility. For bathing, the form indicates that if needed, boarding homes providing assistance with ADLs must occasionally remind residents to wash and dry all areas of their body, provide stand-by assistance getting into and out of the tub/shower, and steady the resident during bathing.
There are check boxes for additional bathing assistance: provide physical assistance, help washing areas that are hard to reach, total bathing assistance, bed baths, special equipment, assistance or devices, and other assistance that is described by the facility.
Oversight and monitoring of assisted living facilities varies by State because each State is responsible for establishing its own licensing requirements. Much like nursing home inspections, surveyors follow protocols that track licensing requirements and standards. All States reported that they receive and investigate complaints. Complaints that involve resident care are investigated within specified time limits while complaints that do not involve direct care may be investigated by phone or during the next scheduled survey.
The typical survey process includes an annual, unannounced on-site inspection of the facility. The inspection includes:
A few States post the survey guide on their Web sites. Minnesota's survey guide describes the survey process and the primary areas of focus.15 The process includes an entrance conference; interviews with staff, residents, and/or resident representatives; a tour to observe the level of compliance; observations of the care provided; a review of policy, procedures, resident records, and personnel records; and an exit conference.
The guide includes a list of questions that might be asked of residents or their representatives. Questions asked by surveyors in Minnesota are similar to those described by licensing officials in other States:
During the exit conference, a licensing survey form is given to the licensee that lists the indicators of compliance (based on the licensing rules), outcomes observed, and comments (met, correction order issued, or education provided). Facility staff may request a conference if they disagree with the findings.
California posts a self-assessment guide on its Web site as part of its technical support program. The form allows administrators to monitor their own compliance. The form describes the licensing requirements and has check boxes for the administrator to note whether they meet or do not meet the requirements. The areas covered are medications; physical plant; resident rooms; bathrooms; supplies; food service; personal property; resident observation; records (staff and resident); administration; incident reporting; and other.
A few States implemented changes to the oversight process that add components that are not typically found in other States and may be considered innovative. Wisconsin and Kansas initiated activities to better assure quality. The Wisconsin Bureau of Quality Assurance created an "Assisted Living Forum" for stakeholders to discuss current issues, interpretation of regulations, best practices, quality improvement, staffing issues, national and State trends, and other public policy issues.
Wisconsin has also revised its survey process for residential care apartment complexes—its apartment model of assisted living—which is not licensed but has to be either registered or certified to serve Medicaid clients. The new process includes a technical assistance component to interpret requirements; provide guidance to staff on consumer quality of life and care; review provider systems, processes, and policies; and explain new or innovative programs.
The revised survey strategy includes seven types of surveys: initial, standard, abbreviated, complaint, verification, monitoring, and self-report. The State determines which type of survey to conduct for each facility based on a range of factors, including its citation history. Abbreviated surveys are performed for facilities that have no enforcement actions over the past 3 years and no substantial complaints or deficiency citations.
Kansas has adopted a collaborative oversight approach. Facility staff accompany the surveyor during the review. Observations are discussed during the process, and when necessary, problem areas are reviewed in the context of the regulatory requirements. Deficiency statements focus on consumer outcomes.
The licensing director also conducts a full-day training course several times a year on the role of licensed nursing in assisted living facilities for nurses, operators, and owners. The training covers use of the assessment, developing a services plan, managing medications, and the Nurse Practice Act. The State believes that the combination of regular visits, consistent application of the regulations, and a more collaborative oversight process and training have resulted in better compliance with the regulations and fewer complaints.
Several States reported organizing periodic training for facility staff or including articles in a newsletter about specific problems that surveyors find are occurring in a number of facilities.
The Residential Care Services (RCS) unit of the Aging and Disability Services Administration (ADSA) in Washington conducted a State-wide provider satisfaction survey from October 2003 through June 2005. RCS sent the survey on postcard to boarding homes following licensing inspections conducted during this period. The purpose of the survey was to collect input from providers regarding their interactions with RCS staff during their visits to facilities.
Ninety-six percent of the 156 facilities that responded said they strongly agreed that they were treated with respect during the inspection; 89 percent agreed that they were listened to by the surveyor; 87 percent felt they had the opportunity to provide information during the inspection; and 80 percent strongly agreed that they received useful information during the process. ADSA plans to use feedback from the surveys to revise procedures, train staff, and improve methods for working with the providers, families, and residents.
Idaho adapted to the limited staff by inspecting facilities every 3 years if there were no deficiencies on two successive surveys and no complaints had been filed. The licensing agency's Web site provides online support to administrators. The site has a toolkit of guides and checklists. The guides address informal dispute resolution, survey and technical assistance, and policies and procedures. Checklists are available for:
New York uses teams of staff to review programs, nutrition, and physical plants. A registered nurse was added to the survey team because resident acuity has increased over the past 4 years. New York implemented a quality assurance committee to improve the oversight process. The committee is chaired by central office staff and includes one representative from each region in the State.
The committee reviews survey reports and citation trends to assess whether the protocols and citations are applied uniformly according to the regulations. Citations are considered violations or findings depending on the impact on resident care. Citations that are issued as violations in one region may be cited as findings in another region.
The New York Department of Health, Adult Home Quality Initiatives Division issued a request for proposals for the EnAbLE (Enhancing Abilities and Life Experience) Program to develop innovative methods to improve the quality of life for individuals living in adult homes, enriched housing programs, and residences for adults. The program was designed to teach independent living skills, provide educational or vocational training, and/or teach residents preventive health care skills and how to manage their own medications.
This program offers operators an opportunity to provide a variety of supportive services to improve quality of life for residents and empower residents to become more independent and integrated into their community through a vocational education program or independent living skills training. The type of activities that might be proposed include teaching and supporting residents to navigate the bus line or transit system, to keep appointments, resolve a disagreement with another resident, increase socialization skills, or manage their needs within a budget. These are skills that may improve a resident's quality of life and independence.
Other programs might assist and mentor a resident in the steps required to enroll, attend, and complete a vocational education or GED program. The Department may award up to $2 million in grants. The maximum award is $100,000.
New Jersey sponsors an annual Assisted Living Quality Initiative Best Practices Program. In 2005, the program selected "The Dining Experience: Using Resident Feedback to Enhance Service" for the best practices topic. Awards were made based on the size of the facilities: small (under 50), medium (50-99), and large (100 and larger). Selection factors include consumer involvement and feedback, the goals of the practice, and the facility's approach to evaluating the impact of the practice.a
Several States use the survey process to offer additional assistance to operators to improve quality. The assistance takes several forms: interpreting regulatory requirements, providing technical assistance or consultation, and referring staff to facilities that may be considered a "best practice" or peers that have successfully improved in a similar area.
State officials in five States described providing assistance during the survey process. Information about the survey process and licensing requirements made available on State Web sites may also be considered to be assistance. Licensing rules in eight States describe requirements for facility quality improvement plans that are reviewed by survey staff.
Some States felt there is a conflict between oversight and consultation or technical assistance functions. One State indicated that facilities are responsible for resolving quality problems, and the State provides consultants to assist them in the process. Other States said they clarify rules or statutes with facility staff during the survey or during exit interviews after the survey is completed.
If the facility is able to correct the problem during the survey, no deficiency is issued. Utah allows new administrators to request assistance and has procedures for the licensing agency to review survey forms, previous reports, and deficiencies with administrators. Pennsylvania provides guidance by disseminating information about best practices.
A few States indicated that they could not provide consultation and technical assistance due to staff shortages and the need to complete surveys.
Inspectors in Iowa hold "community meetings" with residents to obtain feedback on satisfaction and quality. A summary of the discussion is included in the survey report. One summary stated:
A community meeting was held with six tenants in attendance. Tenants reported they enjoy living at this program. The program staff encourages the tenants to make their own decisions and to come and go as they choose. Tenants stated that they have the privacy they expect, and the staff provides the services they need or request. Staff members are courteous and quick to help when needed. Tenants reported the food is good, and they are given a wide variety of choices. They also reported that the RN is available when needed. They feel safe at the program and would recommend this program to their friends and family. Tenants also reported there are plenty of activities available for them.
During regular surveys, reviewers in Minnesota are able to provide information that promotes improved quality of care and to assist licensees to comply with the licensing requirements. Reviewers can provide guidance related to quality of care. They may also interpret and explain the regulations, review the systems and practices as they relate to the licensing requirements, provide information about other available resources, and discuss new or innovative programs that improve quality of care.
Consumers need reliable sources of information to sort through evolving assisted living service options. The Internet has evolved into an excellent tool to help inform consumers about assisted living. Web sites help consumers make informed choices about the utility of assisted living as a viable option for them, and they help prospective residents choose from among the many facilities available to them.
When touring a facility, informed consumers ask more questions about accommodations, staffing, services that are available or not available, findings from oversight agencies, and other factors. Better information supports market forces and creates incentives for providers to improve the quality of their product. Information is readily available from company Web sites, assisted living associations, consumer organizations, and State agencies.
A goal of this project was to describe the extent of information about assisted living that is available on the Web sites of State licensing and aging agencies. Nearly all States post their licensing rules. Forty-two States have created lists or a searchable database of residences. Fourteen States have posted consumer guides, and twenty-six States provide information and forms primarily to assist providers but that consumers might also find useful. The findings suggest that, in general, States have more opportunities to become a valued source of unbiased information for consumers, but limited budgets may hamper their progress.
The amount of information available through the Internet is extensive, and patience and persistence are necessary to find information that is useful to consumers. Searches of State Web sites often lead to specific forms and documents rather than to a general page with links to multiple resources. Knowing the agency responsible for regulating assisted living does not always shorten the search unless there is a clear link to licensure requirements or types of settings.
Maintaining a Web site requires dedicated resources. The more extensive the information, the more staff resources needed. The Florida Department of Elder Affairs created its Web site with support from a grant from the Coming Home Program. Information about licensing and training requirements and forms were assembled and posted. These materials remain reasonably current over time, and updates are needed only when the rule or procedures change.
Information that is available from the licensing application—name of the facility, address, and phone number—is relatively easy to post and maintain. Additions and deletions are needed as new residences are licensed and others close or change owners. Adding additional information such as the name of the manager or contact person requires more frequent updates as staff members change. Sites that contain information about monthly fees and services are more difficult to maintain because changes occur more frequently.
Information can be reported to the licensing agency by each licensed residence, uploaded to the database by the facility staff, or collected by a State agency. The Florida project staff established the initial database using information obtained from each licensed residence. After the initial entry, each residence is responsible for updating its own information.
Efforts to develop methodologies to profile facilities have been slow to emerge. Several State respondents suggested that government should not be grading the quality of care or rating facilities but should provide information that helps consumers make decisions.
One State discontinued posting survey findings because of reductions in staff and the need to support other activities. However, a small number of States were interested in doing so.
The lack of data on resident health and functional status limits the information available to develop a rating system based on resident outcomes. For example, are residents in facility 'A' more or less likely to lose weight, experience ADL declines, or participate in activities than residents in facility 'B'?
Only one State routinely collects health and functional assessment data, and one other State requires but has not yet received the reporting of assessment data from assisted living facilities.
Most States have not automated the collection and storing of survey findings and results from complaint investigations. Automation would make it easier to develop ways to rate facilities and to post survey findings on a Web site. Most State respondents indicated that they do provide copies of survey findings to consumers upon written request, but the findings are not always available on State agency Web sites.
Several States reported difficulty in obtaining funds to hire more survey staff to keep pace with the growth of licensed facilities. Monitoring quality of care is likely to remain a priority as new resources became available. Initiatives that expand the information available to consumers may not be implemented until staffing resources are increased.
The project found an abundance of information about assisted living on the Web sites of State agencies. The type and extent of the information varied significantly across States. More information is available for owners and operators, but attention to the needs of consumers seems to be increasing. State agencies face competing demands for resources from multiple consumer and providers groups. State aging agencies in particular serve consumers with a broad spectrum of needs and interests. Developing Web sites that include and update information about different programs and services is complex and resource intensive and may not become the highest priority.
Several initiatives would be useful to States to support their efforts to expand the information they make available to consumers.
One useful effort would help assess the usefulness of State Web sites. The navigation and content of State Web sites vary considerably across States. A consumer feedback group could be formed to prepare a standard format for reviewing and critiquing State Web sites. Each Web site would be reviewed, evaluated, and scored by a team of consumers. A "report card" would be prepared and submitted to the State that rates the site and its components and offers suggestions for improving the Web site. Some of the components of the report card might include:
As described in Section II of this report, consumer guides vary widely. The group could also review and critique consumer guides currently available. The group could make recommendations on the topics that would be most beneficial to include in a guide and suggest a format for presenting the information.
Licensing officials in California, Maine, Montana, New Hampshire, Pennsylvania, Virginia, and West Virginia expressed an interest in developing ways to organize and post survey and complaint findings. A workgroup might be formed that includes States that currently post this information, States that are interested in doing so, and relevant stakeholders.
States could work together to develop a prototype Web site that would profile differences in quality of providers based on survey and complaint data. Alternatively, States could work on their own and assemble a small group of policymakers, measurement experts, information technology staff, consumers/family members, private consumer organizations, and provider groups to develop templates for displaying information about facilities.
An effort of that type would need cooperation from all interested parties, and measures would need to be standardized. In addition to the standard information generally listed by States—the name of the facility, address, phone number, contact person, and licensed capacity—the template could include a list of the factors typically found in a disclosure statement or resident agreement.
A more ambitious effort would include measures that would allow consumers to compare the types of services provided, differences in quality, and differences in the physical and social environments and philosophy of care. Searchable databases could be designed that allow consumers to search based on specific services that are available, price, type of units, location, and other factors identified by consumers.
It may be possible to develop a Web site in which participation by facilities would be voluntary rather than as a State requirement. As long as sufficient numbers of facilities participate, it still would be useful to consumers. Because survey findings can be technical and difficult to understand, consumer feedback would be useful to develop user friendly Web sites that display the information in a way that is meaningful and readily understood. At the same time, provider groups need to believe the measures truly represent real differences in facilities.
Ideally, facilities could be compared on many aspects that are relevant to consumer choice. For some aspects, there are good measures, while for others there are not. The process could be developed iteratively based on data States currently collect, so that consumers could access available information early in the search process. Additional items could be added as measures are validated and meet needs of all stakeholders. In this way the need for improved information can be addressed, but the process assures that the measures are truly useful for making informed choices.
a See Section III, New Jersey, for more information on this program.