Regulations And Guidelines For Special Care Units

Chapter 5

Regulations And Guidelines ForSpecial Care Units

ContentsPage

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133THE EXISTING REGULATORY STRUCTURE FOR NURSING HOMES . . . . . . . . . 134

Federal Regulations for Medicare and Medicaid Certification of Nursing Homes . . . 134State Licensing Regulations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138State Certificate of Need Regulations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138Other State and Local Government Regulations That Apply to Nursing Homes . . . . . 138Survey and Certification Procedures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139State Long-Term Care Ombudsman Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139S ummary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 140

STATE REGULATIONS AND OTHER STATE POLICIES FORSPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 140Six States’ Regulations for Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141States That Are Developing or Considering Developing Regulations for

Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . 146States That Have Developed or Are Developing Guidelines for Special Care

Units or for the Care of People With Dementia in All Nursing Homes . . . . . . . . . . . 147States That Have Certificate of Need Exceptions for Special Care Units . . . . . . . . . . . 148Other State Policies for Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149summary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149

SPECIAL CARE UNIT GUIDELINES DEVELOPED BY OTHER PUBLICAND PRIVATE ORGANIZATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151The American Association of Homes for the Aging-’ ‘Best Practices for Special

Care Programs for Persons With Alzheimer’s Disease or a Related Disorder” . . . 151The Massachusetts Alzheimer’s Disease Research Center—’ Blueprint for a

Specialized Alzheimer’s Disease Nursing Home” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152The Alzheimer’s Disease Education and Referral Center—’ ‘Standards for

Care for Dementia Patients in Special Care Units” . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152The University of South Florida’s Suncoast Gerontology Center—"Draft Guidelines

for Dementia Specific Care Units (DSCUs) for Memory Impaired Older Adults” . 152The University of Wisconsin-Milwaukee’s Center for Architecture and Urban

Planning Research-’ Environments for People With Dementia: Design Guide” . 153The Alzheimer’s Association Legislative Principles and Guidelines for

Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153The Alzheimer’s Society of Canada-Forthcoming Guidelines . . . . . . . . . . . . . . . . . . . . 153The Alzheimer’s Coalition of Connecticut-Forthcoming Guidelines . . . . . . . . . . . . . . 153U.S. Department of Veterans Affairs-Forthcoming Guidelines . . . . . . . . . . . . . . . . . . . 154Multi-Facility Nursing Home Corporations-Special Care Unit Guidelines . . . . . . . . 154The Joint Commission on Accreditation of Healthcare Organizations-Draft

Surveyor Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 154Summary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155

FigureFigure Page5-1. Minimum Data Set for Nursing Home Resident Assessment and

Care Screening (MDS) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137

Chapter 5

Regulations And Guidelines For Special Care Units

INTRODUCTIONIn response to concerns about the diversity of

existing special care units, the lack of standards toassist families, nursing home surveyors, and othersin evaluating the units, and widespread allegationsthat some special care units provide nothing specialfor their residents, six States have developed regula-tions for special care units, and other States are in theprocess of doing so. The Alzheimer’s Associationhas developed legislative principles for special careunits to assist States in formulating regulations. Inaddition, the Alzheimer’s Association and manyother public and private organizations have devel-oped or are in the process of developing guidelinesfor special care units.

These regulations and guidelines are or would besuperimposed on the existing regulatory structurefor nursing homes—a complex, multi-layered struc-ture

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that includes six major components:

Federal regulations for Medicare and Medicaidcertification of nursing homes,State licensing regulations for nursing homes,State certificate of need regulations for nursinghomes,

other State and local government regulationsthat apply to nursing homes,

the survey and certification procedures associ-ated with each of these types of regulations, andthe oversight and advocacy procedures of eachState’s Long-Term Care Ombudsman Program.

In addition to these six components, Federal,State, and local government regulations for nursinghomes incorporate standards established by privateorganizations, such as the National Fire ProtectionAssociation’s Life Safety Codes. Because thesestandards are incorporated into government regula-tions, they become part of the regulatory structure.Lastly, about 5 percent of nursing homes in theUnited States choose to be accredited by a privateorganization, the Joint Commission on Accredita-tion of Healthcare Organizations (JCAHO) (214).These nursing homes are surveyed by JCAHO andmust meet JCAHO standards, as well as Federal,State, and local government requirements.

The regulatory structure for nursing homes iscurrently undergoing massive changes due to theimplementation of the nursing home reform provi-sions of the 1987 Omnibus Budget ReconciliationAct (OBRA-87). The provisions of OBRA-87 per-tain to the Federal regulations for Medicare andMedicaid certification of nursing homes and thesurvey and certification procedures associated withthose regulations, but the changes mandated byOBRA-87 are so extensive they affect other compo-nents of the regulatory structure as well.

This chapter describes the existing regulatorystructure for nursing homes, including the changesmandated by OBRA-87. It discusses State regula-tions and other State policies for special care units.It also describes the guidelines for special care unitsthat have been developed or are being developed byvarious public and private organizations.

The policy question addressed by the chapter iswhether there should be special regulations forspecial care units. On the one hand, the rapidproliferation of special care units, the lack ofstandards to help families, nursing home surveyors,and others evaluate the units, and the pervasiveallegations that some special care units providenothing special for their residents argue for thedevelopment of regulations. On the other hand, thecurrent lack of agreement about the particularfeatures that are necessary in a special care unit andthe lack of research-based evidence of the effective-ness of any particular features make it difficult todetermine what the regulations should say beyondgeneral statements about goals and principles and alisting of the issues that require special considerationin the care of nursing home residents with dementia(e.g., physical design, staff training, security, activ-ity programs, family involvement, and residentrights).

As this chapter points out, many of the FederalMedicare and Medicaid regulations mandated byOBRA-87 are directly relevant to the complaints andconcerns expressed by families and others about thecare provided by most nursing homes for individualswith dementia. The OBRA regulations rarely men-tion cognitive impairment or dementia, but theresident assessment system developed to implement

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134 . Special Care Units for People With Alzheimer’s and Other Dementias

OBRA-87 focuses on the assessment of a resident’scognitive status and the identification of problemsand care needs that are common among nursinghome residents with dementia. OBRA regulationsrequire that residents’ needs be assessed, using thisor a similar assessment system, and that once theirneeds are identified, appropriate services be pro-vided to meet those needs.

The regulations for special care units now in effectin six States were not developed in the context of thenew OBRA regulations. The six States’ regulationsaddress some common areas, but their requirementsin each of these areas vary, and each State’sregulations include requirements for features notincluded in the other States’ special regulations.Moreover, some of the requirements are very spe-cific. The inclusion of requirements for particularfeatures in special care unit regulations implies thatthese features are important in the care of nursinghome residents with dementia; that other featureswhich are not required by the regulations are notimportant in the care of these residents; and that thelimited resources of nursing homes should beexpended for the required features rather than otherfeatures. As yet, however, there is no consensusabout the particular features that are necessary in aspecial care unit and no evidence from research tosupport requirements for any particular features.

OTA concludes from the analysis in this and thepreceding chapters that from a Federal perspective,the objective of improving nursing home care forindividuals with dementia will be better served atpresent by initiatives to develop greater knowledgeand agreement about the particular features that areimportant in the care of nursing home residents withdementia, to determine how those features fit intothe regulatory framework created by OBRA-87, andto support and monitor the implementation ofOBRA-87 than by the establishment of new Federalregulations for special care units. Many of the sameconsiderations that lead to this conclusion wouldseem to apply equally to the development of Stateregulations for special care units.

THE EXISTING REGULATORYSTRUCTURE FOR NURSING HOMES

Nursing homes are said to be among the mosthighly regulated entities in this country (201).Federal State, and local government regulationsapply to virtually all facets of nursing homes’

physical design and operation. Nursing homes areinspected at least annually by surveyors or teams ofsurveyors who evaluate the facilities’ compliancewith one or more of these types of regulations. Staffmembers or volunteers representing the State’sLong-Term Care Ombudsman Program also visitnursing homes to investigate and resolve complaintsabout resident care. This section describes each ofthe components of the regulatory structure.

Federal Regulations for Medicare andMedicaid Certification of Nursing Homes

The legislation that created the Medicare andMedicaid programs gave the Federal Governmentthe authority to establish requirements for nursinghomes that choose to participate in the programs.Nursing homes must be certified as meeting theserequirements in order to receive Medicare or Medic-aid payment for any of their residents. As of 1985,75 percent of the nursing homes in this country werecertified for Medicare, Medicaid, or both, and thesefacilities accounted for 89 percent of all nursinghome beds (467).

The requirements for Medicare and Medicaidcertification of nursing homes have been changedseveral times in the past two decades, most recentlyas a result of OBRA-87 and amendments to OBRA-87 enacted since 1987. Prior to the implementationof OBRA-87, there were separate certification re-quirements for skilled nursing facilities (SNFs)participating in the Medicare and Medicaid pro-grams and intermediate care facilities (ICFs) partici-pating in the Medicaid program. Effective in 1990,OBRA-87 eliminated the distinction between SNFsand ICFs for Medicaid purposes. A single set ofrequirements for Medicaid certification of nursingfacilities (NFs) is now in effect. Separate but verysimilar requirements for Medicare certification ofSNFs are also in effect (456,225).

The current requirements for Medicare and Medic-aid certification of nursing homes were first pub-lished by the Health Care Financing Administration(HCFA) in February 1989 (462). The final version ofthese requirements was published by HCFA inSeptember 1991 (463). The requirements addressresidents’ rights, residents’ quality of life, residentassessment, care planning, staff credentials, stafftraining, use of physical restraints, use of psy-chotropic and other medications, quality of care,nursing, physician, dietary, social work, dental, and

Chapter 5--Regulatiom And Guidelines For Special Care Units ● 135

rehabilitative services, activities, handling of resi-dents’ funds, record-keeping, physical plant, pread-mission screening, and other areas.

Many of the requirements are directly relevant tothe complaints and concerns of families and othersabout the care provided by most nursing homes forindividuals with dementia. (See table 1-1 inch. 1 fora list of these complaints and concerns.) The mostrelevant of the requirements are quoted here from theSeptember 1991 version of the “Requirements forLong-Term Care Facilities” (463).

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“The facility must care for its residents in amanner and in an environment that promotesmaintenance or enhancement of each residentsquality of life.”‘‘The facility must promote care for residents ina manner and in an environment that maintainsor enhances each resident’s dignity and respectin full recognition of his or her individuality. ’“The facility must conduct initially and period-ically a comprehensive, accurate, standardized,reproducible assessment of each resident’sfunctional capacity.’“The facility must develop a comprehensivecare plan for each resident that includes mea-surable objectives and timetables to meet are-sident’s medical, nursing, mental, and psycho-social needs that are identified in the compre-hensive assessment. ’“A comprehensive care plan must be preparedby an interdisciplinary team, that includes theattending physician, a registered nurse withresponsibility for the resident, and other appro-priate staff in disciplines as determined by theresident’s needs, and to the extent practicable,the participation of the resident, the resident’sfamily or the resident’s legal representative. ’“Each resident must receive and the facilitymust provide the necessary care and services toattain or maintain the highest practicable physi-cal, mental, and psychosocial well-being, inaccordance with the comprehensive assessmentand plan of care. ’“Based on the comprehensive assessment of aresident, the facility must ensure that a resi-dent’s abilities in activities of daily living donot diminish unless circumstances of the indi-vidual’s clinical condition demonstrate thatdiminution was unavoidable.’“Based on the comprehensive assessment of aresident, the facility must ensure that a resident

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whose assessment did not reveal a mental orpsychosocial adjustment difficulty does notdisplay a pattern of decreased social interactionand/or increased withdrawn, angry, or depres-sive behaviors, unless the resident’s clinicalcondition demonstrates that such a pattern wasunavoidable.“The facility must provide for an ongoingprogram of activities designed to meet, inaccordance with the comprehensive assess-ment, the interests and the physical, mental, andpsychosocial well-being of each resident.”“If specialized rehabilitative services, such asbut not limited to physical therapy, speech-language pathology, occupational therapy, andhealth rehabilitative services for mental illnessand mental retardation, are required in theresident’s comprehensive plan of care, thefacility must:

1. provide the required services, or2. obtain the required services from an

outside...provider of specialized rehabil-itative services. ’

‘‘The resident has the right to be flee from anyphysical or chemical restraints imposed forpurposes of discipline or convenience, and notrequired to treat the resident’s medical symp-toms.’“Each resident’s drug regimen must be freefrom unnecessary drugs. An unnecessary drugis any drug when used:

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in excessive dose (including duplicatedrug therapy); orfor excessive duration; orwithout adequate monitoring; orwithout adequate indications for its use;orin the presence of adverse consequenceswhich indicate the dose should be re-duced or discontinued; orany combinations of the reasons above. ”

resident, the facility must ensure that:

1. residents who have not used antipsy-chotic drugs are not given these drugsunless antipsychotic drug therapy is nec-essary to treat a specific condition anddocumented in the clinical record, and

136 ● Special Care Units for People With Alzheimer’s and Other Dementias

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2. residents who use antipsychotic drugsreceive gradual dose reductions and be-havioral interventions, unless clinicallycontraindicated in an effort to discontinuethese drugs.”

“The facility must provide: a safe, clean,comfortable, and home-like environment, al-lowing the resident to use his or her personalbelongings to the extent possible...(and in-cluding) adequate and comfortable lightinglevels in all areas; comfortable and safe temper-ature levels; ..(and) comfortable sound levels. ’“The resident has the right to retain and usepersonal possessions, including some furnish-ings, and appropriate clothing, as space per-mits, unless to do so would infringe upon therights or health and safety of other residents. ’“A facility must not use any individual work-ing in the facility as a nurse aide for more than4 months, on a full-time, temporary, per diem,or other basis, unless:

1. that individual has completed a trainingand competency evaluation program, or acompetency evaluation program approvedby the State, and

2. that individual is competent to providenursing and nursing-related services. ’

“The facility must provide regular perfor-mance review and regular in-service educationto ensure that individuals used as nurse aidesare competent to perform services as nurseaides. In-service education must include train-ing for individuals providing nursing andnursing-related services to residents with cog-nitive impairments” (463) (emphasis added).

With the exception of the last requirement, noneof these requirements mentions cognitive impair-ment or dementia. Many of the requirements refer,however, to residents’ needs as identified by therequired comprehensive assessment. If the compre-hensive assessment identifies the needs of residentswith dementia, the regulations require that theseneeds be met.

OBRA-87 mandated the development of a set ofcore items to be addressed in the required compre-hensive assessment. In 1988, HCFA contracted witha consortium of researchers at Research TriangleInstitute, Hebrew Rehabilitation Center for Aged,Brown University, and the University of Michiganto develop a resident assessment system that would

include these core items (308). The resulting assess-ment system consists of two parts: 1) the MinimumData Set, a 5-page resident assessment instrument,and 2) 18 Resident Assessment Protocols thatprovide additional information to assist nursinghome staff members in assessing and developingcare plans for residents with certain problems (309).States may use this assessment system or developone of their own, provided the system they developincorporates the core items (308).

The Minimum Data Set emphasizes the assess-ment of a resident’s cognitive status. Six questionsabout cognitive status appear on the first page of theassessment instrument, immediately after the basicidentifying information about the resident (309).(Fig. 5-1 shows the first page of the Minimum DataSet.) Other sections of the assessment instrumentinclude questions about problems and care needsthat pertain particularly to residents with dementia.One section asks, for example, whether the residentneeds ‘supervision, including oversight, encourage-ment, or cueing ‘‘ in order to perform activities ofdaily living (309). Another section asks about moodproblems (e.g., agitation and withdrawal) and be-havioral symptoms (e.g., wandering, verbal andphysical abusiveness, and socially inappropriate ordisruptive behavior). That section also asks whetherthe “behavior problem has been addressed by aclinically developed behavior management pro-gram. . .(not including) only physical restraints orpsychotropic medications” (309). Other sectionsask about the resident’s customary routine, theresident’s involvement and preferences in activities,the number of medications he or she is taking, thenumber of days in the preceding week he or she hasreceived antipsychotic, antianxiety, or antidepressantmedications, and the frequency of use of physicalrestraints.

A one-page form to be used for quarterly reviewof a resident’s comprehensive assessment alsoemphasizes cognitive status and certain problemsand care needs that pertain particularly to residentswith dementia (309). The form includes questionsabout memory, cognitive skills for daily decision-making, behavioral symptoms, the number of daysin the preceding week the resident has receivedantipsychotic, antianxiety, or antidepressant medi-cations, and the frequency of use of physicalrestraints. It also repeats the question about theresident’s need for ‘‘supervision, including over-

Chapter 5-Regulations And Guidelines For Special Care Units . 137

MINIMUM DATA SET FOR NURSING HOME RESIDENT ASSESSMENT AND CARE SCREENING (MDS)(Status in last 7 days, unless other time frame indicated)

SECTION A. IDENTIFICATION AND BACKGROUND INFORMATION

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sight, encouragement, or cueing” in order to per-form activities of daily living.

One of the 18 Resident Assessment Protocols ison dementia. The protocol provides additionalinformation about dementia to help nursing homestaff members assess the resident accurately anddevelop an appropriate care plan (309). Several otherResident Assessment Protocols address problemsand care needs that are relevant for nursing homeresidents with dementia, including delirium, psy-chosocial problems, behavioral symptoms, activi-ties, psychotropic drug use, and physical restraints.

Compared with other assessment instrumentsused in nursing homes in the past, the residentassessment system developed by the consortium,including the Minimum Data Set and the ResidentAssessment Protocols, places much greater empha-sis on assessment of residents’ cognitive status andthe problems and care needs that are common amongnursing home residents with dementia. Although theexistence of this resident assessment system doesnot guarantee that a resident’s needs will be accu-rately identified or, once identified, that the needswill be met, the existence of the system certainlymakes both outcomes more likely.

As of January 1992, all States were using theresident assessment system developed by the con-sortium (329). Eleven States had added some itemsto the Minimum Data Set.

State Licensing Regulations

Each State licenses nursing homes on the basis ofState standards. Although nursing homes thatchoose not to participate in the Medicare andMedicaid programs are not subject to FederalMedicare and Medicaid regulations, all nursinghomes are subject to State licensing regulations,including nursing homes that serve only private-payresidents (225,320).

State licensing regulations vary greatly. SomeStates have very complex, stringent, licensing regu-lations, whereas other States have simpler, lessstringent regulations (94,225,318). In 1984, one-fourth of the States were using the Federal Medicaidregulations for State licensing purposes (318).

Administrative rulings and interpretations of Statelicensing regulations are common. These adminis-trative rulings and interpretations become part of a

State’s licensing regulations and generally add totheir complexity.

Five States have changed their licensing regula-tions to add requirements for special care units, andone State has established requirements for specialcare units as an interpretation of the State’s licensingrequirements. These State regulations and require-ments are discussed later in this chapter.

Federal Medicare and Medicaid regulations re-quire that nursing homes have a State license (463).In effect, therefore, for a given State, the Federalregulations incorporate that State’s licensing regula-tions. In the case of States whose requirements aremore stringent or just different than the Federalrequirements in some other way, these different andmore stringent State requirements effectively be-come part of the Federal requirements.

State Certificate of Need Regulations

State certificate of need laws require explicit Stateapproval before a nursing home can be built or

expanded. As of 1988, 38 States had such laws(333). Certificate of need laws are intended to limitthe supply of nursing home beds in a State. It isgenerally believed that any additional nursing homebeds will eventually be filled with Medicaid-eligibleresidents and ultimately increase State expendituresfor nursing home care (318). By controlling the bedsupply, certificate of need laws are expected to limitthese expenditures.

The process of obtaining a certificate of need islengthy and complex in many States. Tables 6-2 and6-3 in chapter 6 list the steps involved in obtaininga certificate of need in Massachusetts and NewYork. As discussed later in this chapter, at least sixStates have altered the process for obtaining acertificate of need so that applicants who propose tocreate special care units receive special considera-tion.

Other State and Local GovernmentRegulations That Apply to Nursing Homes

Many State and local government regulationsapply to nursing homes as well as other buildings,businesses, and health care facilities. These regula-tions include fire safety codes, zoning codes, build-ing codes, and sanitation codes. Some of theseregulations are incorporated into the requirementsfor obtaining a State license or a certificate of need.

Chapter 5-Regulations And Guidelines For Special Care Units ● 139

Survey and Certification Procedures

Nursing homes are inspected regularly by individ-ual surveyors or teams of surveyors who monitor thefacilities’ compliance with each of the types ofregulations discussed thus far in this chapter. Al-though the regulations are clearly important inthemselves, their impact depends on how they areinterpreted and applied by the surveyors.

Inspection and certification of nursing homes isprimarily a State function (149,225). Each State hasat least one agency--often referred to as a surveyand certification agency—that performs inspectionsfor Medicare and Medicaid certification of nursinghomes. This agency usually also performs inspec-tions for State licensing purposes, but other Stateand local agencies are involved in these inspectionsas well. heal building inspectors, fire marshals, andsanitarians inspect nursing homes in connectionwith certification requirements, licensing require-ments, and other State and local government regula-tions that apply to nursing homes. The Departmentof Veterans Affairs (VA) also inspects all VA andnonVA nursing homes in which it places veterans(289).

The resources allocated by State and local govern-ments to nursing home inspections vary. A 1989survey of State agencies that perform inspections forMedicaid certification and/or State licensing foundthat 5 States had fewer than one surveyor for every10 nursing homes, whereas 5 States had 3 or moresurveyors for every 10 nursing homes (149).

OBRA-87 mandated changes in the survey andcertification procedures for Medicare and Medicaidcertification of nursing homes. Coupled with thenew requirements for Medicare and Medicaid certi-fication, the survey procedures mandated by OBRA-87 are intended to focus more on residents and theoutcomes of care than on written policies, staffcredentials, physical design features, and otherfactors that may affect a facility’s capacity toprovide care (309,462,456). The new survey proce-dures are also intended to allow survey agencies toconcentrate their attention on nursing homes thatprovide substandard care (456). OBRA-87 requiresthat each nursing home receive an unannounced“standard survey” annually. Facilities that arefound in the standard survey to provide substandardcare must receive an “extended survey” within 2weeks. The extended survey is intended to identify

the facility’s policies and procedures that resulted inthe substandard care.

OBRA-87 makes States responsible for the stand-ard and extended surveys (320,456). Annually, theFederal Government is required to conduct valida-tion surveys of at least 5 percent of the nursinghomes surveyed by each State in order to determinethe adequacy of the State survey. The FederalGovernment is also required to inspect State-ownednursing homes.

OBRA-87 requires that surveys for Medicare andMedicaid certification of nursing homes be con-ducted by a multidisciplinary team, including aregistered nurse (320). Members of the survey teammust meet minimum Federal qualifications, includ-ing completion of a federally approved training andtesting program. OBRA-87 also requires that Statesurvey and certification agencies employ sufficientstaff to investigate complaints and to monitorfacilities that do not meet the requirements or are indanger of falling out of compliance (320).

One purpose of the new survey procedures is toreduce the inconsistency of survey procedures indifferent States and localities (320). OBRA-87requires that the standard and extended surveys usea survey instrument developed, tested, and validatedby the Federal Government. The surveyor trainingrequirements mentioned above are also intended toreduce the inconsistency in survey procedures.

In September 1989, HCFA issued interpretiveguidelines to help surveyors apply the new require-ments for Medicare and Medicaid certification ofnursing homes (320). The guidelines were revisedfollowing the release in September 1991 of the finalrequirements for Medicare and Medicaid certifica-tion of nursing homes. In late 1991, HCFA sent therevised guidelines out for review. The guidelinesprescribe methods to be used in conducting inspec-tions, including procedures for interviewing resi-dents and reviewing resident assessments and careplans.

State Long-Term Care Ombudsman Programs

The Older Americans Act mandates that everyState have a Long-Term Care Ombudsman Programto investigate and resolve complaints of residents ofnursing homes and other residential care facilities.The State programs vary, but most States use bothpaid and volunteer staff and have offices at both the


State and local level. In 1990, State ombudsmanprograms had an average of one paid staff memberat the State or local level for every 3200 nursinghome beds; the range in different States was fromone paid staff member for every 789 beds to one paidstaff member for every 21,500 beds (321). Totalspending for State Long-Term Care OmbudsmanPrograms averaged $11.15 per nursing home bed peryear and ranged from $2.09 to $68.05 per bed peryear in different States.

Ombudsmen have the authority to enter a nursinghome at any time to investigate a complaint oradvocate for an individual resident (320). They canalso visit nursing homes to become acquainted withthe residents, monitor their care generally, andinform them of their rights. A 1990 survey oflong-term care ombudsmen found that only 16percent reported visiting the nursing homes in theirjurisdiction more than once a month for any of thesepurposes (321).

OBRA-87 created a new role for State Long-TermCare Ombudsman Programs in connection with thesurvey process for Medicare and Medicaid certifica-tion of nursing homes. The law requires the surveyand certification agency to contact the Long-TermCare Ombudsman Program to inquire about com-plaints the ombudsman program may have receivedabout a facility that is being surveyed (320). Thesurvey and certification agency is required to invitethe ombudsman to attend the exit conference at theend of a facility’s survey when the survey findingsare discussed. Lastly, the survey and certificationagency is required to inform the ombudsman if thefacility is not in compliance with any of thecertification requirements.

Summary and Implications

The existing regulatory structure for nursinghomes is extremely complex, and many aspects ofthe structure are in flux now because of OBRA-mandated changes in the Federal regulations forMedicare and Medicaid certification of nursinghomes and the survey and certification proceduresassociated with those regulations. The OBRA-mandated changes are likely to improve the carereceived by nursing home residents with dementia.The resident assessment system developed to imple-ment OBRA-87 focuses much more than assessmentinstruments used previously in nursing homes on theresidents’ cognitive status. The assessment system

emphasizes the care needs that are common amongnursing home residents with dementia, and OBRAregulations require that services be provided to meetthose needs.

Two factors could limit the benefits of OBRA-related changes for individuals with dementia. Oneobvious factor is a failure to implement the changes.Such a failure could occur as the result of a lack ofleadership and political will at the Federal, State, orlocal level. It could also occur as a result ofinsufficient government funding to implement thechanges, including insufficient Medicare and Medic-aid reimbursement for nursing home care, insuffi-cient funding for nurse aide training, and insufficientfunding for survey and certification staff and sur-veyor training. Some of this funding comes from theFederal Government, but some comes from States,so finding problems that affect implementation ofOBRA are likely to vary from State to State.

The second factor that could limit the benefits ofOBRA-related changes for individuals with demen-tia is lack of knowledge among nursing homeadministrators and staff members and nursing homesurveyors about the implications of the new require-ments for residents with dementia. With respect tothe OBRA-87 requirements cited earlier in thischapter, these individuals might ask, for example:what constitutes good quality of life for a residentwith dementia; what constitutes unavoidable dimi-nution in the resident’s ability to perform activitiesof daily living; what activities meet the interests andneeds of nursing home residents with dementia;what rehabilitative services are needed by nursinghome residents with dementia; what is a safe,home-like environment, and what are comfortablelevels of sound, lighting, and temperature? Research-based answers to these and other similar questionsdo not exist at present, and certain of the questionsare not amenable to research. There is also disagree-ment among clinicians about the answers. Yetanswers are needed for effective implementation ofthe new requirements.

STATE REGULATIONS AND OTHERSTATE POLICIES FOR SPECIAL

CARE UNITSAs of early 1992, six States had special regula-

tions for special care units. At least five additionalStates were developing regulations, and other Stateswere considering doing so. One State had guidelines

Chapter 5--Regulations And Guidelines For Special Care Units ● 141

for special care units instead of regulations, and oneother State was in the process of developingguidelines. Other policies for special care units thathave been implemented by a few States includealtering the process for obtaining a certificate ofneed so that applicants who propose to establishspecial care units receive special consideration,funding individual special care units, and fundingresearch on special care units. This section discussesthese State regulations and policies.

Some of the State regulations and policies forspecial care units have been mandated by Statelegislatures, and others have been put in place byexecutive decision. The initiative for the regulationsand other policies has usually come from Stateofficials and/or State Alzheimer’s disease taskforces, but these individuals and groups were oftenresponding to concerns raised originally by familymembers, special care unit operators, and nursinghome surveyors.

The regulations and policies differ in their pri-mary intent. Some are intended primarily to assurethat special care units are not established andoperated solely for marketing purposes and do, infact, provide something special for their residents.Other regulations and policies are primarily in-tended to protect the rights of special care unitresidents, particularly those in locked units. Stillother regulations and policies are intended to pro-mote the establishment or evaluation of special careunits.

Some industry representatives believe that Statesestablish regulations for special care units in part toraise State revenues (337). States generally chargenursing homes fees in connection with new con-struction or extensive remodeling. Consequently,special care unit regulations that include physicaldesign requirements are likely to generate fee-basedincome for the State.

Six States’ Regulations for Special Care Units

Six States—Iowa, Texas, Colorado, Washington,Tennessee, and Kansas, have special regulations forspecial care units. Iowa created a new licensingcategory for special care units, and Texas created avoluntary certification program. Colorado, Wash-ington, and Tennessee added requirements for spe-cial care units to their general licensing requirementsfor all nursing homes, and Kansas added an interpre-

tation on special care units to its licensing require-ments for all nursing homes.

The regulations developed by these six States arepresented in some detail in this section. OTA’sintent in presenting these regulations in detail is tocall attention to their diversity and some of theparticular features they require.

Iowa’s Regulations for Special Care Units

Iowa is the only State that currently requiresspecial care units to have a special license in additionto the license all nursing homes must have. Therequirements for the special license were developedin 1988 by a task force appointed by the IowaDepartment of Inspections and Appeals. The depart-ment’s intent in creating a special license was toassure that special care units provide appropriatecare for their residents and are not established onlyfor marketing purposes (334). When first imple-mented in November 1988, the special license wasvoluntary in the sense that nursing homes had toobtain a license for a special care unit only if theywere going to advertise they had such a unit. In thefirst year, one nursing home applied for a speciallicense.

At the urging of the State’s Task Force onAlzheimer’s Disease and Related Disorders, thelicensing requirements were made mandatory, effec-tive in July 1990. Now, nursing homes must have aspecial license if they are caring for individuals withdementia in a distinct part of the facility, with aseparate staff, and if they care only for individualswith dementia in that part of the facility (334). Thelicense, which was frost referred to as a license for‘‘special units for people with Alzheimer’s diseaseor related disorders, “ is now referred to as a licensefor ‘‘chronic confusion or dementing illness units orfacilities.’ This change is intended to precludefacilities from arguing that they do not have to obtaina special license because their residents do not havea diagnosis of Alzheimer’s disease. As of July 1991,17 nursing homes had obtained a special license, and2 more facilities had applied but not yet beenapproved for a license.

To obtain a special license, therequire a unit to have:

. a statement of philosophy,stated in terms of outcomes,

Iowa regulations

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admission and discharge policies, including apolicy requiring a physician’s approval for aresident’s admission to the unit,an interdisciplinary care planning team,safety policies that specify a method of lockingor otherwise securing the unit and steps to betaken if a resident is missing from the unit,policies that explain the programs and servicesoffered in the unit,policies that describe the numbers, types, andqualifications of the unit staff,policies that assure residents’ right to havevisitors,quality assurance policies,preadmission assessment of residents,staff training, including at least 6 hours oftraining for all new staff on nine topics listed inthe regulations and 6 hours of inservice trainingannually for all staff,2 hours of nursing staff time per resident perday, and a staff member on the unit at all times(Iowa Administrative Code, Sections 10A.104(5)and 135c.14).

In October 1990, several physical design specifi-cations were added to the Iowa regulations. Theyrequire a special care unit to have:

. a design such that residents, staff, and visitorsdo not pass through the unit to reach other partsof the facility,

. a locking system that meets the Life SafetyCode and is approved by the fire marshal or analternate system for securing the unit,

. a secure outdoor area with nontoxic plants,

. no steps or slopes,

. a separate dining area used only for unitresidents,

. a private area for nurses to prepare residentrecords,

. a unisex toilet room that is visible from thelounge and activity area, and

. a design that minimizes breakable objects(Iowa Administrative Code, Section 61.13).

Iowa is enforcing the licensing regulations, andseveral nursing homes have closed their special careunit because the unit did not meet the licensingrequirements (169). When officials of the IowaDepartment of Inspections and Appeals becomeaware of a unit that is not licensed, they do notcharge the facility with a violation of the regulations,but they do visit the unit to determine whether it is

a special care unit within the regulatory definition,and if it is, they notify the facility that a speciallicense is required (334).

The administrator of one nursing home in Iowathat has had a special care unit for 5 years told OTAthat although the unit is providing good care for itsresidents, it does not meet the licensing require-ments (452). She believes some of the State’srequirements, particularly the physical design speci-fications added in 1990, are overly rigid and requirefeatures that are not necessary for good care ofresidents with dementia.

Texas’ Regulations for Special Care Units

Texas has a voluntary certification program forspecial care units that was mandated by the Statelegislature in 1987 and became effective in February1988. Like the early phase of Iowa’s licensingprogram, nursing homes in Texas only have toobtain a license for a special care unit if they aregoing to advertise that they have such a unit. Thecreation of the voluntary certification program wasintended to encourage the establishment of specialcare units. As of September 1991, however, only 8special care units had been certified, even though theDepartment of Health is aware of at least 60 nursinghomes in the State that have a special care unit (1 12).

To be certified, the Texas regulations require aunit

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safety measures to prevent residents fromharming themselves or leaving the unit withoutsupervision,policies to prevent residents from abusing theproperty and rights of other residents,staff training, including at least 8 hours oftraining for all new staff on five topics listed inthe regulations and 4 hours of inservice trainingannually for all staff,specified staff-to-resident ratios for each shift,staff who are assigned exclusively to the unit,a social worker to assess the residents onadmission, conduct family support group meet-ings, and identify and arrange for the use ofcommunity resources,a specified amount of space per resident inpublic areas, including the dining area,a specified number of showers, bathtubs, toi-lets, and lavatories per resident,a nurses’ station with a place to write, a chair,‘‘task illurination, ’ a telephone or intercom to

Chapter 5--Regulations And Guidelines For Special Care Units . 143

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the main staff station, and a place to storeresident records,activity and recreational programs tailored tothe individual resident’s needs,resident access to a secure outdoor area with notoxic plants,admission practices that limit admission toindividuals with a diagnosis of Alzheimer’sdisease or a related dementing disorder whoseattending physician has documented the rea-sons for the individual’s admission to the unit,patient care practices that provide for residents’privacy during treatment and personal care,patient care practices that provide for careful,time-limited use of restraints and psychotropicmedications,at least two exits,latches or other fastening devices for the exitdoors that are easy to release, even in the dark,andif the exit doors are locked, the facility musthave a complete sprinkler system or fire alarmsystem; the locks must release automatically ifthe sprinkler or alarm system is activated or ifthere is a power failure; and there may be akeypad or buttons at the door for routine use bythe staff (Texas Department of Health, Chapter145, Subchapter B, 145.301-145.304).

At public hearings in October 1989, witnessesmade both positive and negative comments aboutTexas’ voluntary certification program (443). Thepositive comments focused on the importance of thetraining requirements and the value of the certifica-tion program in providing initial guidelines forfacilities and preventing facilities from advertisinga special care unit that does not meet minimumstandards. The negative comments focused on thedifficulty of setting standards in a changing field andthe need for revisions to the standards that wouldrequire higher staff levels during some periods of theday, documentation of staff training, and programsand policies to address the needs of family members.Officials of two companies that have several nursinghomes with special care units in Texas told OTA thatthe companies consider the State’s requirements forvoluntary certification difficult to meet and costly;that some of the companies’ facilities are certifiedand others are not; and that the companies do notbelieve their certified facilities are providing bettercare than their uncertified facilities (3,141).

Colorado’s Regulations for Special Care Units

Colorado has special requirements for “secureunits’ which apply to locked special care units aswell as any other locked nursing home units. Therequirements were developed in 1985-1986 by theColorado Department of Health. Their primaryintent is to protect individuals who are placed inlocked units (409). The requirements are incorpo-rated in the State’s regulations for all nursing homes,and no special license or certification is required forthe units.

The Colorado regulations require a‘ ‘secure unit’to have:

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an admissions evaluation team with specifiedmembers, including a person with mentalhealth or social work training who is not amember of the nursing home staff,admission practices to ensure that individualsare not placed on the unit unless the evaluationteam finds that: 1) they are dangerous tothemselves or others, or 2) they habituallywander and would not be able to find their wayback, or 3) they have significant behavioralproblems that seriously disrupt the rights ofother residents, and 4) less restrictive alterna-tives have been unsuccessful in preventingharm to themselves or others, and 5) legalauthority for the restrictive placement has beenestablished,admission practices to ensure that individualsare not placed on the unit for punishment or theconvenience of staff and that the unit is the leastrestrictive alternative available,admission practices to ensure that those placedon the unit because they are dangerous tothemselves or wander habitually are protectedfrom residents who are dangerous to others orwhose behavior disrupts the rights of others,documentation of the reasons for residents’admission to the unit and a physician’s ap-proval of the admission,written programs to treat the residents it admits,practices to allow visitors,sufficient staff to provide for the needs of theresidents,staff whoneeds andunit,additionalmeet the

are experienced and trained in thecare of the types of residents in the

social work and activities staff tosocial, emotional, and recreational


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needs of residents and the social and emotionalneeds of residents’ families in coping with theresidents’ illness,social services and activities that allow regularinteraction with non-confused residents of thefacility and the outside community,a provision that residents may not be lockedinto or out of their rooms,a specified amount of space per resident inpublic areas,a secure outdoor area, if the facility has anoutdoor area for residents of other units,practices that meet the fire safety standards ofthe 1985 Life Safety Code, andperiodic reevaluation of the residents’ place-ment (Colorado regulations for Long-TermCare Facilities, sections 19.1-19.9).

Colorado regulations specify that residents withAlzheimer’s disease whose condition has stabilizedmay remain on the unit if the evaluation teamconcludes the “placement is necessary to avoid alikely recurrence of the condition that was thepurpose of the initial placement on the unit”(Colorado Regulations for Long-Term Care Facili-ties, section 19.5.3).

Washington’s Regulations for Special Care Units

Washington State has special requirements for“protective units for cognitively impaired resi-dents.’ One set of requirements was implemented in1986 as an interpretation of the State’s licensingrequirements for all nursing homes (500). In 1989,the interpretation was replaced by a new set ofrequirements that are incorporated in the State’sregulations for all nursing homes. No special licenseis required for the units.

As of late 1991, Washington State was reviewingall its nursing home regulations, including therequirements for “protective units for cognitivelyimpaired residents’ (179). Changes in the require-ments are a possibility.

The Washington State regulations require a ‘‘pro-tective unit for cognitively impaired residents” tohave:

a dining area that may also serve as a day roomfor the unit,a secure outdoor area with 1) walls or fences ofa specified height, 2) an ambulation area withfirm stable surfaces that are slip-resistant, 3)exits that release automatically if the fire alarm

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is activated, 4) outdoor furniture, and 5) non-toxic plants,a staff toilet room,corridors no less than 10 feet wide in newconstruction and 8 feet wide in renovated units,floors, walls, and ceiling surfaces of contrastingcolors; the surfaces may conceal areas theresidents should not enter,door thresholds that are one-half inch high orless,an electrical signaling system in each room forstaff use in an emergency,no keyed locks on the exit doors or any doorbetween a resident and the exit; exits may besecured by alarms or doors which requirecognitive ability to open or by other methodsthat open automatically if the fire alarm isactivated; the releasing devices for the doorsmust be labeled with directions, accessible byresidents, and approved for use by the State firemarshal, andno use of a public address system except foremergencies (Washington Administrative Code248-14-211).

Tennessee’s Regulations for Special Care Units

Tennessee has special requirements for “specialcare units for ambulatory patients with Alzheimer’sdisease and related disorders.’ The regulations weredeveloped on the initiative of the Governor’s TaskForce on Alzheimer’s Disease and went into effectin March 1991. Nursing homes with a special careunit must apply to the State’s Board for LicensingHealth Care Facilities to have the unit ‘designated”as a special care unit. To avoid delays in openingnew special care units, nursing homes that are incompliance with the State’s general nursing homerequirements may open a special care unit withoutwaiting for the Board to designate the unit (36).Eventually, however, all special care units must bedesignated by the board.

As of June 1992, 12 special care units had beendesignated by the board, and one additional nursinghome had applied for designation of its special careunit (36). Thus far, no nursing home that has appliedfor designation for a special care unit has been turneddown.

The Tennessee regulations require a‘ ‘special careunit for ambulatory patients with Alzheimer’s dis-ease and related disorders’ to have:


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admission practices such that each resident hasa diagnosis made by a physician that identifiesthe specific cause of the resident’s dementiaand each resident’s need for admission to theunit is determined by an interdisciplinary teamthat includes a physician who is experienced inmanaging individuals with dementia, a socialworker, a nurse, and a relative or other advocatefor the resident,access to a protected outdoor area,separate dining/activity areas,a stated bed capacity that is not exceeded at anytime,a design such that visitors and staff do not passthrough the unit to reach other parts of thenursing home,3.5 hours of direct care per resident per day,including ,75 hours of direct care provided bya licensed nurse,resident care plans that are developed, periodi-cally reviewed, and implemented by an inter-disciplinary team that includes a physician whois experienced in managing individuals withdementia, a social worker, a nurse, and arelative or other advocate for the resident,a 40-hour classroom training program for nurseaides that is in addition to the 40-hour basictraining program for all nurse aides and coversthe causes, progression, and management ofdementia, including methods of responding toresidents’ behavioral symptoms, alleviatingsafety risks, assisting residents with activitiesof daily living, and communicating with resi-dents’ families.procedures for identifying and alleviating job-related staff stress,a family support group that meets at leastquarterly, provides family education and sup-port, and allows for family input into theoperation of the unit, andif the unit is locked, ‘extraordinary and accept-able fire safety features and polices’ to protectthe residents (Tennessee State Rule 1200-8-6-.10)

The original intent of the Governor’s Task Forcein initiating the special care unit regulations was thatMedicaid reimbursement would be increased forspecial care units that met the specified require-ments, but this objective has not been realized. Likeall other States, Tennessee provides no higherreimbursement for Medicaid-eligible individuals in

special care units than in any other nursing homeunit. In the first year after the regulations went intoeffect, the Board for Licensing Health Care Facili-ties received many inquiries about the designation ofspecial care units but relatively few applications.The board’s director believes this is because thecurrent level of reimbursement for Medicaid-eligible individuals does not cover the additionalcost a nursing home would incur to comply with thespecial care unit requirements.

Kansas’ Regulations for Special Care Units

Kansas has requirements for special care units thatwere issued in 1989 as an interpretation of theState’s licensing regulations for all nursing homes.As of September 1991, the Kansas Adult Care HomeProgram was in the process of revising the licensingregulations and had proposed that the interpretationon special care units be included as a requirement inthe revised regulations (267).

The Kansas interpretation requires a special careunit

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admission criteria, including a requirement thatthe resident have a medical diagnosis and aphysician’s order to be admitted,a staff training program and documentation thatstaff members have completed the program,a staff member on the unit at all times;a nurses’ sub-station located so that the corri-dors are visible from the sub-station,nurse-call signals that are visible and audiblefrom the corridors and nurses’ sub-station,living, dining, activity, and recreational areasthat are accessible to the residents,resident care plans that identify the problemsthat justify the resident’s placement on the unitand identify interventions that could correct orcompensate for those problems,methods of securing the unit that are the leastrestrictive possible- and comply with all lifesafety codes (Kansas Administrative Rules,28-39-78 (a) (6) and (7) and 28-39-87 (c) and(e)).

Kansas is enforcing these requirements. At thebeginning of a nursing home inspection, the sur-veyor asks whether the facility has a special care unitand then evaluates the identified unit, if any, on thebasis of the requirements of the interpretation inaddition to the general requirements for all nursinghomes (267). No information is available about the

146 . Special Care Units for People With Alzheimer's and Other Dementias

number of special care units identified in this way bythe surveyors. The director of the State’s Adult CareHome Program told OTA that special care units aremost likely to have trouble with three of therequirements: 1) the admission criteria, 2) the stafftraining, and 3) the resident care plan (267).

States That Are Developing or ConsideringDeveloping Regulations for Special Care Units

State legislatures in four States have mandated thedevelopment of special regulations for special careunits. Two State health departments are developingregulations for special care units without a priorlegislative mandate, and one State health departmentis considering doing so. State Alzheimer’s diseasetask forces and other legislatively appointed bodiesin several States have recommended the develop-ment of regulations for special care units, and in oneState, the legislature has mandated the appointmentof a committee to determine whether regulations areneeded.

In 1989, the Arkansas legislature passed a billrequiring the Department of Human Services toestablish a mandatory certification program forspecial care units. In 1990, after considering theissue of regulations for special care units and withthe approval of the bill’s legislative sponsor, thedepartment decided not to go ahead with thecertification program (147). As of early 1992,however, the State was reconsidering this issue. Onepossibility being considered was the creation of anew licensing category for special care units.

In 1989, the Nebraska legislature passed a resolu-tion mandating a study of special care unit standardsthat would result in recommendations for legislationto regulate the units (323). In response, the Gover-nor’s Alzheimer’s Disease Task Force formed asubcommittee to examine this issue and makerecommendations. The subcommittee’s report, re-leased in November 1989, specifies principles,goals, and objectives for special care units, a list ofrecommended policies and procedures that are verysimilar to Iowa’s requirements for a special care unitlicense, and a proposed training program for specialcare unit staff members. The subcommittee recom-mended that the Nebraska Department of Healthdevelop regulations based on the content of thisreport and the Iowa licensing requirements, Thesubcommittee concluded that required staffing ra-tios for special care units should be based on ‘acuity

ratings of the patients” and that Medicaid reim-bursement for residents of special care units shouldalso be based on “acuity ratings” and on the cost tothe nursing home of complying with the Staterequirements for special care units, once developed(323). As of September 1991, the Department ofHealth was still working on draft regulations (447).

In 1991, the Oregon legislature passed a billrequiring nursing homes and residential care facili-ties that have a special care unit to register with aState agency, the Senior and Disabled ServicesDivision, by Oct. 1, 1991 (335). Twenty-fourfacilities registered by that date, including 20nursing homes and 4 residential care facilities (126).The Oregon legislation also requires that by June 1,1993, facilities with a special care unit must have aspecial ‘‘endorsement’ on their general license. Toobtain the endorsement, the special care units willhave to meet requirements in three areas: “1) careplanning, including physical design, staffing, stafftraining, safety, egress control, individual careplanning, admission policy, family involvement,therapeutic activities, and social services; 2) conti-nuity of basic care requirements; and 3) marketingand advertising of the availability of and servicesfrom Alzheimer’s care units” (335). As of early1992, the Senior and Disabled Services Division wasdeveloping the requirements for the endorsement.An advisory committee that includes three Alz-heimer’s advocates, three industry representatives,and one official of an area agency on aging had beenappointed to assist the division in developing therequirements(126).

In 1991, the North Carolina legislature passed abill requiring the State Medical Care Commission todevelop standards for special care units in nursinghomes and requiring the State Social ServicesCommission to develop standards for special careunits in residential care facilities. Both sets ofstandards are to address “the type of care providedin a special care unit, the type of resident who can beserved on the unit, the ratio of residents to staffmembers, and the requirements for the training ofstaff members’ (33 1). As of early 1992, both sets ofstandards had been drafted and were in the approvalprocess (71). As a part of that process, the Statelegislature asked for a cost impact statement todetermine the cost implications of the standards.

The New Jersey Department of Health is develop-ing regulations for special care units (161). The

Chapter 5--Regulations And Guidelines For Special Care Units ● 147

regulations will require special care units to meet 65percent of the requirements if they are going toadvertise as a special care unit.

The Oklahoma Department of Health is alsodeveloping regulations for special care units, pri-marily in response to recommendations of the StateTask Force on Alzheimer’s Disease and RelatedDisorders (326). The regulations will require specialcare units to have a special license in addition to thelicense all nursing homes must have.

The New Mexico Department of Health is consid-ering the development of regulations for special careunits (499). The department intends to work with theAlzheimer’s Association and the School of Nursingat the University of New Mexico on this project.

In the past few years, State Alzheimer’s diseasetask forces in at least two additional States—Arizona, and Indiana-have recommended the de-velopment of regulations for special care units(14,65,203). In its 1989 report, the Arizona AdvisoryCommittee on Alzheimer’s Disease and RelatedDisorders cited complaints from many familiesabout ‘difficult and stressful encounters with poorlyrun homes’ and about the lack of standards andregulatory guidance in the selection of residentialcare homes (14). The committee recommended thatthe Arizona Department of Health Services beauthorized “to develop guidelines, set standards,and regulate specific Alzheimer’s patient care unitsin nursing homes that are presented to the public asproviding specialized care” (14). Following therelease of its 1989 report, the committee developeddraft standards. As of early 1992, the State had notyet agreed to enforce the standards, and the commit-tee was seeking ways to obtain voluntary compli-ance (432).

In Indiana, the State’s Family and Social ServicesAdministration contracted with the Alzheimer’sAssociation of Greater Indianapolis to developstandards for special care units and to make arecommendation about whether the State shouldinstitute either a voluntary or a mandatory certifica-tion program for special care units (428). Thecontract ran from January 1992 to June 1992.Although the standards proposed by the Alzheimer’sAssociation may eventually be the basis for regula-tion, the State has not yet committed itself toestablishing regulations.

In California, some members of the State’sAlzheimer’s Advisory Committee drafted guide-lines for special care units but concluded that itwould take several years to get the guidelinesincorporated into the State’s nursing home regula-tions with or without legislation (484). As a result,the committee is working with California’s nursinghome associations and individual nursing homeoperators toward eventual voluntary implementa-tion of the guidelines. As of July 1992 the draftguidelines were being reviewed by the associations,consumers, policymakers, and others (255).

In Rhode Island, in early 1992, the Long-TermCare Coordinating Committee, a legislatively ap-pointed body, approved draft legislation to createstandards for special care units (284). The draftlegislation has been sent to the State legislature.

Lastly, in Virginia, in March 1992, the Statelegislature passed a resolution requiring the estab-lishment of a committee to determine whether theState should have regulations for special care units.The Virginia Department of Mental Health hasappointed the committee.

States That Have Developed or AreDeveloping Guidelines for Special Care

Units or for the Care of People WithDementia in All Nursing Homes

New Hampshire has guidelines for special careunits, and Missouri is developing such guidelines.The New Hampshire guidelines are published in an8-page booklet that has one section for families whoare trying to evaluate special care units and anothersection for nursing home operators who are inter-ested in establishing a special care unit (325). Byproviding information for families and nursing homeoperators in the same publication, the New Hamp-shire booklet directs the attention of the nursinghome operators to what families are likely to belooking for in a special care unit.

The New Hampshire State agency that producedthe booklet chose to publish guidelines rather thanregulations because of an awareness of the diversityof opinions about special care units both inside andoutside the State government (216). The agency hasnot ruled out the possibility of developing regula-tions in the future.

In 1990, the Missouri Division of Aging ap-pointed a special care unit committee to develop


guidelines (153). One reason Missouri chose todevelop guidelines rather than regulations was abelief in the State that nursing homes would expectregulations to be accompanied by increased reim-bursement for special care units and that thedevelopment of guidelines would not create thatexpectation.

Massachusetts took a different approach thanother States in its ‘‘Guidelines for Care of PatientsWith Alzheimer’s Disease and Related Disorders inMassachusetts Long-Term Care Facilities. ” Theseguidelines, published in 1988, pertain to the care ofindividuals with dementia in any nursing home unit(288). As of late 1991, anew set of guidelines for thecare of individuals with dementia in nonspecializednursing home units was being reviewed (362). At thesame time, the Eastern Massachusetts Chapter of theAlzheimer’s Association, in cooperation with theMassachusetts Department of Health, was drafting aseparate set of guidelines for the care of individualswith dementia in special care units.

In its 1991 report, the Maryland CoordinatingCouncil on Alzheimer’s Disease and Related Disor-ders recommended an approach similar to the 1988Massachusetts guidelines (286). The Council rec-ommended that the State work with industry andadvocacy groups to develop guidelines that wouldapply to the care of individuals with dementia in anynursing home unit. The Council also recommendedthat the State collect information about special careunits. It recommended against the development ofregulations, saying, “States and advocacy groupswhich have attempted to develop regulations ordetailed guidelines for special care units have notbeen particularly successful” (286).

States That Have Certificate of NeedExceptions for Special Care Units

As noted earlier, certificate of need laws areintended to limit the supply of nursing home beds ina State. At least six States--Georgia, Kentucky,Michigan, Mississippi, New Jersey, and Ohio-have altered the process for obtaining a certificate ofneed, either on an ongoing or a one-time basis, sothat applicants who propose to create special careunits or special nursing homes for people withdementia receive special consideration. To OTA’sknowledge, only two of these States, Kentucky andMichigan, have special requirements for the units orfacilities developed with a certificate of need excep-

tion (35,155,161,172). This lack of requirementscreated consternation in at least one of the otherStates when State surveyors were preparing for theirannual inspection of a facility that had created aspecial care unit with a certificate of need exception,and the surveyors wanted to know what to look forwhen they inspected the unit (155).

In Kentucky, the legislature created a time-limitedexception to the State’s certificate of need law toallow the establishment of “free-standing facilitieslimited to the care of patients with Alzheimer’s orrelated disorders’ (172). The facilities had to beapproved by July 1991 and have to meet speciallicensing requirements. Interestingly, the licensingrequirements for free-standing Alzheimer’s facili-ties do not apply to special care units, and free-standing Alzheimer’s facilities do not have to meetthe State’s regulatory requirements for all nursinghomes. As of the cutoff time in July 1991, onefacility had obtained a license, and another facilitywas in the process of doing so (343).

Effective in 1989, the Michigan Certificate ofNeed Commission set aside 200 beds from the totalnumber of allowable new nursing home beds in theState to be used for special care units. The Commis-sion determined that special care units createdthrough this certificate of need exception must:

admit only patients who require long-term careand have been appropriately classified as hav-ing a score below a given level on the GlobalDeterioration Scale, a widely used assessmentinstrument,participate in the State Alzheimer’s registry,operate for a minimum of 5 years and conductand participate in research programs approvedby the department to evaluate the effectivenessof special care units and to study the relation-ship between the needs of Alzheimer’s patientsand the needs of other nursing home residents,be affiliated with a research facility or program,be attached or geographically adjacent to alicensed nursing home,have no more than 20 beds,have direct access to a secure indoor or outdoorarea for unsupervised activity,have a separate dining room for use only byresidents of the unit,have a physical environment designed to mini-mize noise and light reflections, andhave trained staff (304).


As of March 1991, the first five applicants forcertificate of need exceptions had been disapprovedbecause they did not submit a research protocol orwere not affiliated with a research program (514).

Other State Policies for Special Care Units

In addition to regulations, guidelines, and certifi-cate of need exceptions, several States have pro-vided finding for individual special care units or fortraining staff members in special care units. In 1987,Massachusetts initiated its “Alzheimer’s Unit PilotProgram” which has provided funding for eightnursing homes to create special care units. Connec-ticut has provided funding for a 120-bed nursinghome and research center devoted to the care ofindividuals with Alzheimer’s disease. Florida hasprovided funding for a long-term care facility andresearch center for individuals with Alzheimer’sdisease. Each of these projects is intended todevelop, demonstrate, and evaluate methods ofspecialized dementia care.1

California has funded at least two studies ofspecial care units. One study compared two nursinghome special care units, two nonspecialized nursinghome units, and two specialized programs forindividuals with dementia in board and care facili-ties (256). The results of this study are discussed inchapter 3. A second study is comparing variousmethods of preventing individuals with dementiafrom wandering away from a care setting. The studyis evaluating the effectiveness of door alarms andwrist bands vs. a locked perimeter in achieving thispurpose (484).

Beginning in 1991, Michigan has provided fund-ing to the Alzheimer’s Care and Training Center, aspecial care unit in Ann Arbor, Michigan, to supportresearch on the care of individuals with dementiaand to provide training about dementia for staff ofthe State’s community mental health centers (384).Rhode Island has provided funding for the past sixyears for a training program that has been instrumen-tal in establishing several special care units andspecialized adult day centers (284).


Special care units are clearly an area of policyinterest in many States. As discussed in the preced-ing sections, there are now:

six States with regulations for special care units(IA,TX,CO,WA,TN,KS);five States in the process of developing regula-tions (NC,NE,NJ,OK,OR);one additional State that has passed legislationto mandate the development of regulations(AR);three additional States in which the State-appointed Alzheimer’s task force or long-termcare advisory council has recommended thedevelopment of regulations (AZ,IN,RI);one State that has passed legislation to establisha committee to study the need for regulations(VA);one State with guidelines for special care units(NH);one State that is developing guidelines forspecial care units (MO);one State with guidelines for the care ofindividuals with dementia in any nursing homeunit (MA);one State in which the Alzheimer’s task forcehas recommended the development of guide-lines for the care of individuals with dementiathat would apply to any nursing home unit(MD);six States that have altered the process forobtaining a certificate of need to encourage theestablishment of special care units(GA,KY,MI,MS,NJ,OH); andsix States that have provided funding forindividual special care-units, for training inspecial care units, or for research on specialcare units (MA,CA,CT,FL,MI,RI).

These figures and the discussion in the precedingsections reflect information available to OTA as ofearly 1992. The figures indicate that a total of 28States have, are in the process of developing, or areconsidering developing policies of some kind forspecial care units. (Five States are included twice inthe list.)

1 Several other States, e.g., Illinois and New York, have provided funding for nursing homes to develop improved methods of caring for residentswith dementia in nonspecialized units. The New York Medicaid program pays an additional $4 a day for residents with Alzheimer’s disease in any nursinghome (201). Maine and Oregon subsidize the care of some residents with dementia in specialized board and care facilities (303,501).


State policies for special care units are changingrapidly. Interest in the development of regulationsfor special care units is clearly growing. In someStates, this interest is unopposed. In other States,such as Illinois, Michigan, Ohio, and Wisconsin, thisissue is controversial, and some groups stronglyoppose the development of regulations. Anecdotalevidence suggests that in a few States, regulatoryproposals developed by Alzheimer’s advocates havebeen opposed by other Alzheimer’s advocates ornursing home industry representatives who havedifferent ideas about whether there should beregulations, and if so, what the regulations shouldsay.

Thus far, State policies for special care units havebeen developed without regard for the nursing homereform provisions of OBRA-87. Some of the Stateregulations for special care units were developedbefore OBRA-87 was passed, and many of theregulations were developed before the publication inFebruary 1989 of the first version of the require-ments to implement OBRA-87. It is surprising,however, that current discussion and debate aboutregulations and guidelines for special care units isproceeding with so little reference to the OBRArequirements. One exception to this observation isthe 1991 report of the Maryland CoordinatingCouncil on Alzheimer’s Disease and Related Disor-ders. The report notes the likelihood that OBRArequirements will improve the care of people withdementia in nursing homes and stresses the impor-tance for Alzheimer’s advocates of monitoringfacilities’ compliance with the requirements (286).

Regulations for special care units now in effect inIowa, Texas, Colorado, Washington, Tennessee, andKansas have both similarities and differences. EachState’s regulations address several common areas,e.g., admission criteria, security, staff training, andsome aspects of physical design, but their require-ments in each of these areas differ. Moreover, eachState’s regulations include requirements for featuresnot addressed in other States’ special regulations,e.g., Iowa’s requirement that the unit and its outdoorarea have no steps or slopes, Washington’s require-ment that floors, walls, and ceilings have surfaces ofcontrasting colors, and Colorado’s requirement thatresidents may not be locked into or out of theirrooms.

What is and is not included in these regulations issignificant because of the implication that features

required by the regulations are particularly impor-tant in the care of nursing home residents withdementia and that other features not addressed by theregulations are not particularly important for theseresidents. The inclusion of certain features suggeststhat nursing home resources should be expended forthose features and not others.

Many of the requirements for special care units inthe six States probably are not more important in thecare of nursing home residents with dementia thanother nursing home residents, e.g., an interdiscipli-nary care planning team (IA,TN); policies thatexplain the programs and services offered in the unit(IA); a social worker to assess residents on admis-sion, conduct family support group meetings, andidentify and arrange for the use of communityresources (TX); activity and recreational programstailored to individual residents’ needs (TX); a staffmember on the unit at all times (KS); and nurse-callsignals that are visible and audible from the corri-dors and the nurses’ sub-station (KS).

Some of the requirements in the six States’regulations duplicate provisions of OBRA-87 thatapply to all nursing home residents. For example,Iowa and Colorado require that special care unitshave policies to allow residents to have visitors. TheOBRA requirement states, “The resident has theright and the facility must provide immediate accessto any resident. . subject to the resident’s right todeny or withdraw consent at any time, by immediatefamily or other relatives of the residents. . and byothers who are visiting with the consent of theresident” (463).

In general, the six States’ requirements focusmore on staff training and physical design featuresand less on activity programs and programs toinvolve and support residents’ families. Althoughthere is no evidence from research that any one ofthese features is more likely than the others toproduce positive outcomes, some dementia expertswould probably favor a greater emphasis on activityprograms and family support programs than exists inthe six States’ requirements.

Notably absent from the requirements of five ofthe six States is any mention of the role ofphysicians, except in approving residents’ admissionto the unit. Likewise, except for the Coloradoregulations, mental health expertise and training arenot mentioned, and their inclusion in the Coloradoregulations may simply reflect the fact that these

Chapter 5--Regulations And Guidelines For Special Care Units . 151

regulations pertain to locked units for psychiatricpatients as well as locked units for individuals withdementia. Requirements for ongoing physicians’involvement with residents appear in other sectionsof the States’ nursing home regulations and in theFederal regulations for Medicare and Medi-caid certification of nursing homes, and there mayalso be requirements for involving individuals withmental health training in other sections of the Statesnursing home regulations. Omission of these fea-tures in the special care unit requirements suggests,nevertheless, that they are less important in the careof nursing home residents with dementia than thefeatures that are included.

The overall impact of State regulations on thegrowth of special care units is unclear. Anecdotalevidence suggests that some of the six States’regulatory requirements may discourage the growthof special care units, primarily because of the cost ofcomplying with the requirements. The HillhavenCorp. estimates that complying with WashingtonState’s requirements increased the remodeling costfor a special care unit that opened in one of theirfacilities in 1991, from $69,000 to $118,000 (261).As a result, the corporation canceled plans for aspecial care unit in another facility in the State.

In considering the impact of State regulations onthe growth of special care units, it is interesting tonote that despite the growing number of special careunits in the United States and the growing interest inregulations for special care units in many States, asof early 1992, there were fewer than 60 special careunits nationwide that were specially licensed, certi-fied, designated, or registered (17 to 19 units inIowa, 8 units in Texas, 12 units in Tennessee, and 20units in Oregon). OTA is not aware of any researchthat compares these licensed, certified, designated,or registered units to other special care units.

SPECIAL CARE UNITGUIDELINES DEVELOPED BYOTHER PUBLIC AND PRIVATE

ORGANIZATIONSIn addition to States, several other public and

private organizations have developed or are in theprocess of developing guidelines for special care

units. Six of these organizations-the Alzheimer’sAssociation, the American Association of Homesfor the Aging, the Massachusetts Alzheimer’s Dis-ease Research Center, the National Institute onAging’s Alzheimer’s Disease Education and Refer-ral Center, the University of South Florida’s Sun-coast Gerontology Center, and the University ofWisconsin-Milwaukee’s Center for Architecture andUrban Planning Research-have completed guide-line documents. The Alzheimer’s Association alsohas legislative principles for special care units. TheAlzheimer’s Society of Canada, the Alzheimer’sCoalition of Connecticut, and the U.S. Departmentof Veterans Affairs are developing guidelines forspecial care units. Some multi-facility nursing homecorporations have formal guidelines or standards fortheir special care units. Lastly, the Joint Commissionon Accreditation of Healthcare Organizations, aprivate organization that offers voluntary accredita-tion for nursing homes, is developing guidelines toassist its surveyors in evaluating special care units inthe nursing homes it accredits. This section brieflydescribes each of these guideline documents andefforts.

Some of the guidelines developed by theseorganizations are intended as a basis for governmentregulations, but most are not. None of the sixcompleted guideline documents is intended as abasis for regulations. It is OTA’s impression thatobtaining agreement among experts in dementia careabout the features that should be required in a specialcare unit is more difficult than some organizationsanticipate. As a result, organizations that begin withthe intention of developing standards that could beused for regulatory purposes sometimes concludelater on that there is insufficient agreement amongexperts to support such standards and decide todevelop guidelines instead.

The American Association of Homes for theAging— “Best Practices for Special CarePrograms for Persons With Alzheimer’s

Disease or a Related Disorder”

In 1988, the Task Force on Alzheimer’s Diseaseof the American Association of Homes for the Agingcompleted its ‘Best Practices’ document (10).2 Thedocument is intended to provide guidelines forexemplary special care programs and to help nursing

2 TO 0~*~ ~Owle@., me ~encm A~~OCiatiOn of H~mes for the Aging’s ‘ ‘Best ~wtiws” document~s not been published. It is available fromthe Association however.


home operators and others distinguish specializeddementia care from standard practice. The documentpoints out that, ‘‘although many of the best practicesappear at first to be the standards of any qualityprogram, when taken as a whole the best practicesdefine what is special about dementia care’ (10). Italso emphasizes that little research has been con-ducted on specialized dementia care, that the “BestPractices” guidelines are based on clinical experi-ence, and that with further experience and research,the guidelines will be validated, improved upon, andexpanded. The document is not intended to be usedfor regulatory purposes.

The 22-page “Best Practices” document ad-dresses seven areas: commitment, philosophy ofcare, therapeutic program, physical design, special-ized staff, communications program, and educationand research (10). For each of these areas, a generalstatement of the best practice is given; the character-istics or components of the best practice are listed;and the desirable outcomes in that area are de-scribed.

The Massachusetts Alzheimer’s DiseaseResearch Center— “Blueprint for a

Specialized Alzheimer’s Disease Nursing Home”

In 1989, with funding from the National Instituteon Aging and the Administration on Aging, theMassachusetts Alzheimer’s Disease Research Cen-ter held a 2-day workshop to develop a plan for aspecialized Alzheimer’s disease nursing home. Theworkshop participants tried to define what should bespecial about specialized care for individuals withdementia, what works for these patients, and whichpatients it works for. The resulting document,released in 1990, provides general conclusions andrecommendations but emphasizes the need forrigorous research on specialized dementia care(287). It is not intended to be used for regulatorypurposes.

The 20-page “Blueprint” document addressesthree areas: policy planning, patient care programs,and architectural design (287). For each of theseareas, a series of interrelated recommendations aremade based on the workshop discussion and laterreview and revisions by the workshop participants.

The Alzheimer’s Disease Education andReferral Center— “Standards for Care forDementia Patients in Special Care Units”

In 1991, the Alzheimer’s Disease Education andReferral Center completed its guidelines for specialcare units (6). The center, which is funded by theNational Institute on Aging, is a clearinghouse forinformation about Alzheimer’s disease for profes-sionals, patients, families, and the general public.The “Standards” document is available to anyonewho requests it. Despite its title, the document doesnot set standards. It discusses the pros and cons ofdeveloping standards for special care units, pointsout the lack of information about many aspects ofspecialized care for individuals with dementia, andemphasizes the need for research on the costs andeffectiveness of special care units. The document isnot intended to be used for regulatory purposes.

The ‘Standards’ document addresses seven areas:admission, environment, activities, staffing, train-ing, expected impacts, and research issues (6). Foreach of these areas, a brief summary of currentthinking is given.

The University of South Florida’s SuncoastGerontology Center— “Draft Guidelines forDementia Specific Care Units (DSCUs) for

Memory Impaired Older Adults”

In 1991, researchers from the Suncoast Gerontol-ogy Center published the findings of a study of 13special care units in west central Florida (64). Asdiscussed in chapter 3, the researchers used the studyfindings to create a typology of ‘‘minimally specific,moderately specific, and highly specific” units. Onthe basis of the study findings and the typology, theresearchers developed guidelines for special careunits (63). The guidelines are not intended to be usedfor regulatory purposes.

The 19-page “Draft Guidelines” document ad-dresses ten areas: goals and philosophy, targetpopulation, admission and discharge criteria, resi-dent assessment, physical environment, activityprograms, unit size and staffing, staff training,family involvement, and ongoing evaluation (63).For each of these areas, a theoretical rationale andseveral specific guidelines are given.


The University of Wisconsin-MilwaukeeCenter for Architecture and Urban PlanningResearch— “Environments for People With

Dementia: Design Guide”

In 1987, the American Institute of Architects andthe Association of Collegiate Schools of Architec-ture contracted with the Center for Architecture andUrban Planning Research at the University ofWisconsin-Milwaukee for a project to developenvironmental design guidelines for special careunits and other specialized settings for people withdementia. The project resulted in an annotatedbibliography (363), a book of facility case studies(96), a regulatory analysis (94), and a design guide(95). The 97-page design guide discusses particularneeds of persons with dementia, related therapeuticgoals for the physical environment, and designprinciples for achieving those goals. It includesfacility case examples and illustrations.

The Alzheimer’s Association-LegislativePrinciples and “Guidelines for Dignity”

In 1988, the Alzheimer’s Association published a13-page booklet to help families of individuals withdementia evaluate special care units (276). Thebooklet provides information about specialized de-mentia care and advises family members to visit aunit and to observe certain aspects of the physicalenvironment, unit staffing, and resident care beforedeciding to place their relative with dementia in theunit.

As the number of special care units has increased,the association’s national office and many of itsmore than 200 chapters nationwide have received anincreasing number of requests from family membersand others for information and advice about specialcare units. Nursing home operators contact Alz-heimer’s Association chapters for help in establish-ing a special care unit, and some chapters areproviding formal or informal consultations to suchfacilities (114,231). State officials also contact thenational office and the chapters for assistance indeveloping State relations for special care units.For these reasons, and because of concerns aboutspecial care units that are apparently establishedonly for marketing purposes and provide nothingspecial for their residents, the association hasdeveloped legislative principles for special careunits (4).

The association’s legislative principles are in-tended to direct legislators’ and regulators’ attentionto the primary areas a State should include whendrafting special care unit legislation or regulations.The 11 areas cited in the association’ s principles are:1) statement of mission, 2) involvement of familymembers, 3) plan of care, 4) therapeutic programs,5) residents’ rights, 6) environment, 7) safety, 8)staffing patterns and training, 9) cost of care, 10)quality assurance, and 11) enforcement (4). Thelegislative principles recommend that States involveproviders, consumers, ombudsmen, activities andoccupational therapists, environmental design spe-cialists, fire and safety officials, and licensure andsurvey officials in drafting specific standards in eachof these areas.

In July 1992, the association released “Guide-lines for Dignity: Goals of Specialized Alzheimer/Dementia Care in Residential Settings.” The 41-page “Guidelines” document discusses eight goalsand guidelines for achieving the goals. The docu-ment is not intended to be used for regulatorypurposes.

The Alzheimer’s Society of Canada—Forthcoming Guidelines

In 1990, the Alzheimer’s Society of Canada, aprivate voluntary association, received a $500,000grant from the Canadian Government for a 3-yearproject to develop guidelines for the care of individ-uals with Alzheimer’s disease in a variety ofsettings, including special care units (7,313). In thefirst year of the grant, a literature review wasconducted; Alzheimer’s Society staff members vis-ited various care settings; and a questionnaire wassent out to 15,000 family caregivers. In 1991, draftguidelines were developed by the society’s staffwith the assistance of an advisory committee (401).The guidelines, which were circulated for outsidereview in early 1992, address 11 areas: involvementin decisionmaking, assessment, staffing, programsand activities, training and education for caregivers,support for caregivers, physical and chemical re-straints, preventing and responding to abuse, envi-ronmental design, and transportation. The societyintends to publish two documents based on theguidelines--one document intended primarily forfamilies and one intended primarily for governmentand provider agencies.


The Alzheimer’s Coalition of Connecticut—Forthcoming Guidelines

The Alzheimer’s Coalition of Connecticut, aprivate nonprofit organization that was formed afterthe expiration of the Governor’s Task Force onAlzheimer’s Disease, has developed a draft docu-ment that describes the important features of aspecial care unit. Although State officials have beeninvolved in the development of the document, it isnot intended as the basis for State regulations (512).

U.S. Department of Veterans Affairs—Forthcoming Guidelines

As discussed in chapter 3, a 1989 survey by theU.S. Department of Veterans Affairs (VA) identifiedspecial care units at 31 of the 172 VA medicalcenters nationwide. In 1991, the VA conducted sitevisits to 13 of the special care units and telephoneinterviews with staff of many of the other units.Partly on the basis of these site visits and interviews,the VA is developing guidelines for “SpecializedAlzheimer’s/Dementia Units” at VA medical cen-ters (103). The guidelines describe three types ofu n i t s - ’ diagnostic,’ “behavioral management,”and ‘‘long-term care’ units. The guidelines discussthe goals and objectives of the units, the types ofresidents served, unit size and location, staffing,space and environmental factors, program evalua-tion, and quality assurance.

Multi-facility Nursing Home Corporations—Special Care Unit Guidelines

Some multi-facility nursing home corporationshave guidelines for special care units in the nursinghomes they own, Hillhaven Corp., which had 56nursing homes with special care units in late 1990,has an extensive policy and procedures manual forthe units (187). The manual was first developed in1982 and was updated in 1984 and 1988 (337). Itdelineates the philosophy and treatment modalitiesof the units, their admission and discharge criteriaand procedures, family services, use of restraints,staff training, and other features. The manual in-cludes resident assessment instruments, guidelinesfor running a family support group, and a qualityassurance checklist.

Unicare Health Facilities, which had 15 nursinghomes with special care units in late 1990, also hasa manual for its units, called ‘‘Lamplighter Units”

(281). The manual describes the care needs ofnursing home residents with Alzheimer’s diseaseand the philosophy, admission criteria, assessmentprocedures, staffing, and care methods of the com-pany’s special care units. The manual includes aresident assessment instrument. Other multi-facilitynursing home corporations that have facilities withspecial care units may also have guidelines for theunits.

The Joint Commission on Accreditation ofHealthcare Organizations—Draft Surveyor Guidelines

Since 1989, the Joint Commission on Accredita-tion of Healthcare Organizations (JCAHO) has beenworking on guidelines to assist its surveyors inevaluating special care units in the facilities itaccredits. As noted earlier, JCAHO is a privateorganization that currently accredits about 1000nursing homes in the United States (214). JCAHO’seffort to develop guidelines evolved from concernsand questions raised by its surveyors about how toevaluate the increasing number of special care unitsthey were seeing in nursing homes accredited by thecommission (434).

JCAHO’s surveyor guidelines, currently out forreview in a fourth draft, are based on the commis-sion’s standards for all nursing homes (213,435). Nochanges have been made to the basic standards.Instead, statements have been added next to many ofthe standards to explain the implications of thestandard for the care of residents with dementia andto describe the process surveyors should follow inevaluating and scoring the special care unit on thatstandard.

The 152-page fourth draft of the surveyor guide-lines is much longer than the other guidelinedocuments discussed in this section. It provideswhat is, in effect, a detailed answer to the question,“What constitutes appropriate care for nursinghome residents with dementia?” Some commenta-tors will undoubtedly disagree with some of itscomponents, and certain of the components proba-bly apply as much to nondemented as dementednursing home residents. There are also instances inwhich the guidelines tell surveyors to determinewhether appropriate or proper care has been given,leaving open the question of what appropriate orproper care is; the frequency of these instances hasdecreased, however, in each successive draft of the

Chapter 5-Regulations And Guidelines For Special Care Units . 155

document. The guidelines are informative and thought-provoking at the least, and the commission is to becredited with creating comprehensive surveyor guide-lines that fit within the broader context of itsstandards for all nursing homes.

JCAHO intends to pilot test the surveyor guide-lines in the summer 1992 in six special care units inthe Chicago area (435). Using the guidelines, twoJCAHO surveyors will inspect the six units. Within2 days, two representatives of the Alzheimer’sAssociation will visit the same units. The surveyors’findings and the observations of the Alzheimer’sAssociation representatives will be compared todetermine whether the guidelines identify the prob-lems that concern consumers.


The completed guideline documents discussed inthe preceding sections are intended to educate andinform. They identify areas that require specialconsideration in the care of nursing home residentswith dementia, but unlike the State regulationsdiscussed earlier in the chapter, the guidelinedocuments generally do not prescribe particularfeatures for special care units. The JCAHO draftsurveyor guidelines differ from the other guidelinedocuments in that they do prescribe many detailedfeatures for special care units, but the JCAHOguidelines are also intended primarily to educate andinform surveyors and to identify areas of specialconsideration in the care of residents with dementia.

The areas of special concern identified in theguideline documents are: activity programs, admis-sion and discharge criteria, conditions of participa-tion, cost and reimbursement, enforcement, familyinvolvement, philosophy and goals, physical envi-ronment, physical restraints and psychotropic medi-cations, plan of care, policies and procedures,quality assurance, research, resident assessment,resident rights, safety egress control, specializedservices (e.g., physician, nursing, social work, anddietary services), and staffing. These areas ofconcern are not necessarily mutually exclusive, andsome are addressed in only one of the guidelinedocuments. Nevertheless, there appears to be someagreement at present about the areas of concern. TheState regulations discussed earlier fit conceptuallywithin the same areas of concern.

Having agreement about areas of concern ishelpful in organizing a discussion about particular

features that might be desirable or required in specialcare units. On the other hand, agreement about areasof concern is not the same as agreement aboutparticular features. For example, agreement thatactivity programs and physical environment areareas of concern does not constitute agreement aboutwhat the activity programs or physical designfeatures should be. It is OTA’s observation that indiscussions about guidelines and regulations forspecial care units, agreement about areas of concernoften masks considerable disagreement about partic-ular features of the units and gives a misleadingimpression that there is consensus about at leastsome particular features that are desirable andshould be required in special care units. Each of thecompleted guideline documents stresses the currentuncertainty about the importance of particular fea-tures and the need for research to clarify manyunresolved questions in this area.

Finally, it should be noted that like the Stateregulations for special care units discussed earlier,the completed guideline documents have not beendeveloped in the context of the nursing home reformprovisions of OBRA-87. Moreover, some of thespecific guidelines in these documents duplicateprovisions of OBRA-87 that apply to all nursinghomes.

CONCLUSIONAs of early 1992, six States had regulations for

special care units. Five States were in the process ofdeveloping regulations, and other States were con-sidering doing so. These State regulations areintended primarily to assure that special care unitsare not established and operated solely for marketingpurposes and do actually provide something specialfor their residents. The regulations have been and arebeing developed in the absence of consensus amongexperts about the particular features that are neces-sary in a special care unit and research-basedevidence to support requirements for any particularfeatures.

Several public and private organizations havedeveloped or are developing guidelines for specialcare units. These guidelines identify areas thatrequire special consideration in the care of nursinghome residents with dementia but generally do notprescribe particular features for special care units.The six completed guideline documents stress thecurrent uncertainty about the importance of particu-

328-405 - 92 - 6 Q L 3


lar features and the need for research on theeffectiveness of various approaches to the care ofnursing home residents with dementia. These sixguideline documents are not intended to be used forregulatory purposes.

The nursing home reform provisions of OBRA-87create a broad, comprehensive regulatory structureaimed at assuring high-quality, individualized nurs-ing home care for all residents. As described in thischapter, the provisions of OBRA-87 address manyof the complaints and concerns of families andothers about the care provided for residents withdementia in many nursing homes. The provisions ofOBRA-87 rarely mention cognitive impairment ordementia, but the resident assessment system devel-oped to implement OBRA-87 focuses clearly on theassessment of a resident’s cognitive status and theproblems and care needs that are common amongnursing home residents with dementia. Once a

resident’s needs are identified, OBRA regulationsrequire that the needs be met.

If fully implemented, the provisions of OBRA-87would improve the care of nursing home residentswith dementia. The problem with OBRA-87 fornursing home residents with dementia is the sameproblem faced by State officials and others who aretrying to develop regulations for special care units:i.e., the lack of agreement among experts aboutexactly what constitutes appropriate nursing homecare for individuals with dementia and the lack ofresearch-based evidence of the effectiveness ofvarious approaches to their care. Solving thisproblem through Federal support for projects toevaluate different approaches to care may eventuallyprovide a substantive basis for regulations. In themeantime, special care units are ideal settings for thenecessary research.

Documents

Regulations And Guidelines For Special Care Units