HOME AND COMMUNITY-BASED SERVICES BARRIERS … · includes care and services funded by Medicare, Medicaid, or state programs. Private HCBS includes care and services funded by consumer

REPORT

Pennsylvania Intra-GovernmentalCouncil on Long-Term Care

March 2002

HOME ANDCOMMUNITY-BASED

SERVICESBARRIERS ELIMINATION

WORK GROUP

P E N N S Y L V A N I AI N T R A - G O V E R N M E N T A L C O U N C I LO N L O N G - T E R M C A R E M E M B E R S

Chairperson: Richard Browdie, Secretary, Pennsylvania Department of Aging

Linda Anthony. . . . . . . . . . . . . . . . . . . . . Citizens with DisabilitiesMatthew Baker. . . . . . . . . . . . . . . . . . . . . Pennsylvania House of RepresentativesDiane Balcom . . . . . . . . . . . . . . . . . . . . . Persons with Alzheimer’s DiseaseMarie Beauchamp . . . . . . . . . . . . . . . . . . Area Agencies on AgingBarbara Dickman . . . . . . . . . . . . . . . . . . . American Association of Retired PersonsJohn Diffey. . . . . . . . . . . . . . . . . . . . . . . . Continuing Care CommunitiesBruce Flannery. . . . . . . . . . . . . . . . . . . . . AIDS OrganizationsRon Ford . . . . . . . . . . . . . . . . . . . . . . . . . County CommissionersLucille Gough . . . . . . . . . . . . . . . . . . . . . Home Health AgenciesLori Griswold . . . . . . . . . . . . . . . . . . . . . . Home Care AgenciesHoward Harris . . . . . . . . . . . . . . . . . . . . . UnionsEdward Horton . . . . . . . . . . . . . . . . . . . . Adult Day Care OrganizationsFeather Houston . . . . . . . . . . . . . . . . . . . Pennsylvania Department of Public WelfareYolanda Jeselnick . . . . . . . . . . . . . . . . . . . Rural HousingLynette Killen. . . . . . . . . . . . . . . . . . . . . . HospitalsM. Diane Koken . . . . . . . . . . . . . . . . . . . . Pennsylvania Department of InsuranceAllen Kukovich . . . . . . . . . . . . . . . . . . . . . Senate of PennsylvaniaKaren McCormack . . . . . . . . . . . . . . . . . . For-Profit Nursing HomesDiane Menio . . . . . . . . . . . . . . . . . . . . . . Center for Advocacy for the Rights and Interests of the ElderlyDainette Mintz. . . . . . . . . . . . . . . . . . . . . Urban HousingHarold Mowery . . . . . . . . . . . . . . . . . . . . Senate of PennsylvaniaJoseph Murphy . . . . . . . . . . . . . . . . . . . . Non-Profit Nursing FacilitiesFrank Pistella . . . . . . . . . . . . . . . . . . . . . . Pennsylvania House of RepresentativesCasey Reeder. . . . . . . . . . . . . . . . . . . . . . Direct Care WorkersCarolyn Rizza. . . . . . . . . . . . . . . . . . . . . . Southwestern Pennsylvania Partnership for AgingCynthia Napier Rosenberg . . . . . . . . . . . . Geriatric PhysiciansJohn Schwab . . . . . . . . . . . . . . . . . . . . . . Personal Care HomesRuth Stoll . . . . . . . . . . . . . . . . . . . . . . . . Pennsylvania Council of ChurchesAnn Torregrossa . . . . . . . . . . . . . . . . . . . Pennsylvania Health Law ProjectSandra Weber . . . . . . . . . . . . . . . . . . . . . Independent LivingHelene Weinraub . . . . . . . . . . . . . . . . . . . Blue CrossEvelyn Wermuth. . . . . . . . . . . . . . . . . . . . Pennsylvania Council on AgingRobert Zimmerman . . . . . . . . . . . . . . . . . Pennsylvania Department of Health

Executive Director: Dale Laninga, Pennsylvania Department of Aging

555 Walnut Street, 5th Floor • Harrisburg, PA 17101-1919(717) 783-1550 • FAX (717) 772-3382

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T A B L E O F C O N T E N T SPage

Home and Community-Based Barriers Elimination Work Group ..................................................................ii

I. Introduction .................................................................................................................................................1

II. Background....................................................................................................................................................2

III. Why does access to home and community-based services need to be improved in Pennsylvania? ............2

IV. What barriers do consumers face in trying to obtain services in their home or community?......................6

A. Procedural Barriers...................................................................................................................................6

Barrier 1. The process for determining eligibility and arranging for and starting services takes too long. ..................................7

Barrier 2. There is nothing simple or seamless about it: applying for services is too convoluted...............................................8

Barrier 3. The requirements for making a Medicaid application “complete” are overwhelming..................................................9

Barrier 4. The amount of time to obtain functional determination must be reduced and clear eligibility criteria must beestablished. ....................................................................................................................................................9

B. Informational Barriers ............................................................................................................................10

Barrier 5. There is a significant lack of information and clear understanding by the consumer about what HCBS are, how to access them........................................................................................................................................10

Barrier 6. There is a lack of knowledge about how to access home and community-based services...........................................12

Barrier 7. There is a considerable amount of stigma surrounding the home and community-based services programs. ..............12

C. Systemic Barriers ....................................................................................................................................13

Barrier 8. The lack of uniform availability of a comprehensive package of HCBS across the state...........................................13

Barrier 9. More services needed for those not yet nursing home eligible. .............................................................................14

Barrier 10. Misunderstanding and dislike of estate recovery program. ..................................................................................15

Barrier 11. There is an entitlement to nursing facility care but no entitlement to home and community-based care. ..................15

Barrier 12. Unavailability of funding for housing..............................................................................................................16

Barrier 13. Lack of publicly funded options for eligible waiver consumers needing the availability of 24-hour services................17

Barrier 14. There is an inadequate work force available to staff the service needs of consumers who want home and community-based services. .............................................................................................................................17

Barrier 15. There is no coordinated system of quality assurance and quality improvement in place for all home and community-based services. .............................................................................................................................18

Barrier 16. The distribution of waiver services across populations needs to be proportional. .....................................................19

Barrier 17. Many people needing waiver services cannot obtain them because they do not meet the narrow categories of disability for the existing waivers. ...................................................................................................................19

Barrier 18. Waiver services need to be more comparable and the scope and eligibility for waivers needs to be maximized. ............20

Barrier 19. Personal care homes/assisted living residence standards and enforcement need to be improved before they can house waiver recipients. ...........................................................................................................................21

Barrier 20. Inability to obtain public funding for services in assisted living residences. ...........................................................21

Barrier 21. The Medicaid resource level is too low. .............................................................................................................21

Barrier 22. There are no state and federal criteria for shared or negotiated risk. ...................................................................22

V. Conclusion ...................................................................................................................................................22

Exhibit A. Chronology of a real-time example for applying for home and community-based services .....24

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H O M E A N D C O M M U N I T Y - B A S E DB A R R I E R S E L I M I N A T I O N W O R K G R O U P

The following persons have participated in the development of this report.

Ms. Christine Allen Life Center, Philadelphia, Pa.

Ms. James Campion PA Department of Public WelfareOffice of Medical Assistance Programs

Ms. Helen-Ann Comstock Alzheimer’s advocate

Mr. Lou Diehl PA Statewide Independent Living Council

Mr. Bruce Flannery PA Coalition of AIDS Service Organizations

Mr. William Gannon PA Department of Public WelfareDeputy Secretary for Office of Social Programs

Ms. Alissa Halperin Pennsylvania Health Law Project

Ms. Chris Klejbuk PA Association of Non-Profit Homes for the Aging (PANPHA)

Ms. Pat McNamara PA Health Care Association

Ms. Diane Menio Center for Advocacy for the Rights and Interests of the Elderly (CARIE)

Mr. John Schwab The Hickman Personal Care Home

Ms. Ann Torregrossa Pennsylvania Health Law Project

Mr. Charles Tyrrell PA Department of Public Welfare Policy Office

Ms. Brenda Uhler PA Department of Public WelfareOffice of Medical Assistance Programs

Ms. Anne Wantz Pennsylvania Health Care Association

This document is an effort to reach as much consensus as was possible.Not all Work Group participants or their sponsoring organizations

are in agreement with all aspects of this report.

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H O M E A N D C O M M U N I T Y - B A S E DC A R E B A R R I E R S

E L I M I N A T I O N W O R K G R O U P R E P O R TI. IntroductionThe concept of Home and Community-BasedServices refers to all supportive services avail-able to assist consumers in living in their homeor community through public and private fund-ing. Home and community-based care helpskeep families living together. Most people incor-rectly believe that Medicare and Medicaid willcover most of their needs for long-term careand services. In fact, Medicare pays for a smallfraction of the costs of long-term care, andwhile Medicaid pays for long-term care, it doesso primarily for those in nursing facilities whohave exhausted their income and resources toMedicaid’s impoverishment levels. Perhaps thisis because people live longer and have moremedical interventions and rehabilitation oppor-tunities than existed 35 years ago, whenMedicare and Medicaid were established.

In the fall of 2000, the Intra-GovernmentalCouncil on Long-Term Care formed a workgroup to evaluate obstacles Pennsylvania’s con-sumers face in their efforts to obtain home andcommunity-based care. The Barriers EliminationWork Group was charged with determining whatbarriers exist to receiving care and services inthe home or community, researching effortsalready underway to eliminate some barriers,and make recommendations for the eliminationof remaining barriers.

The focus of the Work Group is on all publiclyand privately funded home and community-based services (HCBS) for adult consumers withphysical disabilities and cognitive impairments,excluding MH/MR services. Public HCBSincludes care and services funded by Medicare,Medicaid, or state programs. Private HCBSincludes care and services funded by consumerresources or long-term care insurance products.

Many of the barriers discussed herein relateexclusively to publicly funded care while somerelate to both publicly and privately funded care.

The Work Group found approximately 22 barriersthat relate to lack of information and knowledgeabout HCBS, the stigma attached to receivingpublicly funded HCBS, complexities and delaysin establishing functional and financial eligibilityfor publicly funded HCBS, insufficient servicesfor certain geographic or functional populations,unavailability of affordable housing, shortagesin the work force, and lack of quality assurance.While the barriers relate to numerous aspects ofthe system, the Work Group grouped the barriersin terms of those which are procedural, mean-ing those pertaining to the process for obtainingcare or services, those which are informational,meaning those pertaining to the informationnecessary to understand and know about theavailability of care or services, and those whichare systemic, meaning those resulting fromdeeper systems problems that require policyand attitudinal changes to resolve.

The Work Group concluded that eradicating theprocedural barriers to home and community-based services must be the priority. Difficultiesand delays in establishing eligibility for care andservices must be eliminated and care and serv-ices must be made truly available beforeresources are spent educating and informingthe public so that consumers can understandand know about the availability of care or serv-ices. Additionally, improving the packages ofservices through elimination of systemic barriersis the proverbial cart before the horse if theconsumer cannot make it through the procedur-al obstacles to obtaining care and services.

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II. BackgroundOne out of every five people in the Commonwealth is over the age of 601 and Penn-sylvania now has the second-oldest populationin the nation, trailing only Florida.2 Medicalbreakthroughs have meant that each successivegeneration can expect to live longer than thepreceding one. Those living to be over 100 yearsof age will spend over a third of their lives inretirement3 and the result is a “demographicinversion.” No longer will Pennsylvania have aconsiderable population of younger peoplewhich triangles to fewer and fewer people up theage ladder. The non-working elderly is becominga significant portion of our population.

As we age, the likelihood of needing long-termor ongoing care increases dramatically. Pennsyl-vania’s long-term care and services expensesincreased by more than 300 percent between1986 and 1995.4 Over the last decade, the 85and older population of the state increased by61 percent,5 and almost half of this group willsuffer from Alzheimer’s disease, requiring signif-icant long-term care and services.6 In additionto the needs of the elderly population andthose with Alzheimer’s, individuals with disabili-ties also comprise a significant population inneed of long-term care and services.

Long-term care impacts more than just itsrecipients. Family members and friends faceenormous physical, emotional, and financial bur-dens when needs arise. Approximately 80 per-

cent of long-term care is provided in the homeby friends and family members,7 usually women,serving as a critical source of long-term care forpersons needing assistance with activities ofdaily living.8 Many people who need long-termcare have been able to remain at home becauseof the assistance of family members. These days,however, fewer seniors live near their adult chil-dren, and women are increasingly unavailable toprovide assistance because they are in the workforce, juggling careers and family responsibilities.

III. Why does access to home andcommunity-based services need tobe improved in Pennsylvania? Today, an estimated 746,000 Pennsylvaniansneed long term care.9 Seniors and other peoplewith long-term care needs in Pennsylvania usu-ally cannot pay for the cost on their own. Thecosts over time are simply too large.

Long-term care insurance has not been widelyutilized. Long-term care insurance has beenpurchased by only 2–3 percent of seniors.10 Bythe time people begin to think about the needfor help to pay for long-term care, they usuallycannot afford long-term care insurance becausethe premiums for a person their age are beyondtheir reduced retirement income. The averagepersons seeking long-term care are a nearly 70-year-old couple with an annual income of lessthan $35,000, who cannot afford long-term careinsurance premiums of several thousand dollarsa year.11

1 Pennsylvania Department of Aging, Draft State Plan on Aging 2000–2004, p. 7.2 Id., p. 2.3 Secure Aging: The New Society Branches, May 2000, Jewish Health Care Foundation.4 Pennsylvania Department of Aging, Long-Term Care Fact Sheet5 Pennsylvania Department of Aging, Draft State Plan on Aging 2000–2004, p. 8.6 National Alzheimer’s Association Fact Sheet data.7 Pennsylvania Department of Aging, Long-Term Care Fact Sheet, p. 1.8 Merlis, Mark, Financing Long-Term Care in the Twenty-First Century: The Public and Private Roles, Commonwealth Fund, p. 4.9 Assisted Living: A Choice for the Future, Pennsylvania Intra-Governmental Council on Long-Term Care, p.3.10 Merlis, Mark, Financing Long-Term Care in the Twenty-First Century: The Public and Private Roles, Commonwealth Fund, p. 8.

Private insurance spending for long-term care for the elderly amounted to only 1 percent of the total nationally in 1995.11 Secure Aging: The New Society Branches, May 2000, Jewish Health Care Foundation. In Pennsylvania private insurance paid

for 1.95percent of nursing facility care in 1997. Source: Long-Term Care 2000 Statistics and Information, The PennsylvaniaAssociation of Non-Profit Homes for the Aging, Winter 2000, p. 23.

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community-based services options, Pennsylvaniahas not completely purged its long history ofinstitutional bias from its long-term care system.

Pennsylvania spends a large portion of its Medicaid dollars on long-term care, in fact two-thirds of its entire Medicaid budget is spent onlong-term care. However, well over 90 percentof this long-term care expenditure is spentfunding care delivered in nursing facilities.14

While this percentage has shifted in recent yearsfrom the high 90 percentiles to the lower 90percentiles, the number remains above 90 per-cent. Far too often persons needing long-termcare receive it in a nursing home because ofinadequate public funding for long-term careservices in the community. What this report finds,is that far too often persons needing long-termcare receive it in a nursing home because of dif-ficulties and delays in obtaining it in the homeor community.

The costs for Pennsylvania of financing a long-term care system that primarily relies on nursinghome care for a rapidly increasing group of peo-ple will be prohibitive. Soon the need for long-term care and the costs of providing it primarilyin a nursing home will overwhelm the ability ofour work force to pay for this care. Pennsylvaniataxpayers presently pay 40 percent more percapita towards the costs of long-term care thandoes the average taxpayer because of the Com-monwealth’s heavy reliance on nursing facilitycare.15 Our ratio of working persons to seniors isamong the lowest in the country.16 We need tofind more cost efficient means of providinglong-term care and providing care and servicesin the home or a more residential setting in lieuof a nursing facility. The Commonwealth’s own

The situation for working age adults is not muchbetter. Most do not realize they are one seriousaccident or illness away from facing the sameproblems that seniors face when they have long-term care needs. Most of us rely on employer-based health insurance for our health care. Aserious illness or injury that requires long-termcare usually means the loss of one’s job and itsaccompanying health care coverage. Just whenhealth care coverage is really needed, it is lostbecause of the inability to work. Because thepaycheck stops, purchasing the continuation ofthat coverage through COBRA is not possible.Medicare is not available until two years afterSocial Security Disability payments start! OnceMedicare is obtained, it does not cover mostlong-term care needs, because Medicare wasdesigned to cover acute care and rehabilitation.Most long-term care needs are for personal careservices for chronic illness — the kind of carenot covered by Medicare.12

As a result, persons in need of long-term care(1) depend on children for direct care or financ-ing; (2) become impoverished to qualify forstate-funded nursing facility care; or (3) do with-out needed services and support.13 The majority,in fact two-thirds, of those who require long-term care will require public funding for thatcare at some point. With so many Pennsylvani-ans requiring publicly funded long-term care, itis essential to evaluate the publicly funded carethat is available in Pennsylvania.

Until recent years, Pennsylvania has had a considerable institutional bias in its long-termcare spending. While significant efforts havebeen made in the past couple years to shiftresources and to focus attention to home and

12 Secure Aging: The New Society Branches, May 2000, Jewish Health Care Foundation. In Pennsylvania private insurance paidfor 1.95percent of nursing facility care in 1997. Source: Long-Term Care 2000 Statistics and Information, The PennsylvaniaAssociation of Non-Profit Homes for the Aging, Winter 2000, p. 23.

13 Id.14 Id.15 Merlis, Mark, Financing Long-Term Care in the Twenty-First Century: The Public and Private Roles, Commonwealth Fund, p. 15.

Medicaid long-term care spending per working-age adult in Pennsylvania is $254.25 as compared to a national aver-age of $146.13.

16 Id.

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data supports this premise, as does the experi-ence of multiple other states. In 1998, the aver-age Medicaid cost for Pennsylvania to providehome and community-based services to a nurs-ing home eligible person in her own home was$12,780/year. The same cost to provide thoseservices in a nursing facility was $31,653.17

Pennsylvania is spending proportionately farmore on nursing facility care than on home andcommunity-based long-term care services.18

Pennsylvania’s taxpayers spent 40 percent moreper capita on nursing home expenditures19 and92.6 percent less per capita on home and com-munity-based services than the national aver-age.20 In actual dollars, the Pennsylvania Medic-aid Program spent $160.57 per capita on nursingfacility care vs. $1.20 per capita on home andcommunity-based services for the aged andpersons with disabilities.21 There is a significantdisparity that causes Pennsylvania to relyalmost exclusively on nursing facility care toserve the long-term care needs of its Medicaidpopulation.22

The latest statewide data shows that with regardto Medicaid long-term care funding, Pennsylva-nia has been spending its long-term care publicfunding on supporting 54,208 persons in nursing

facilities (92 percent)23 in comparison to 4,563persons receiving home and community-basedservices for aged and persons with disabilities(8 percent).24 With regard to other state funding,Pennsylvania supports approximately 11,000non-nursing home eligible SSI recipients whoreside in personal care homes through the stateSSI supplement.25 Notwithstanding, the long-term care funding for nursing home eligibles(who cannot, by law, reside in personal carehomes) does not adequately meet consumerpreferences or cost benefit analyses.

Consumers prefer more residential settings.Nursing facilities are not the consumer’s firstchoice of long-term care setting. Generally, theyare a last resort. A system that funds institu-tionalization over all other options has theeffect of sometimes institutionalizing personswho require assistance with activities of dailyliving who could otherwise be served in theirhome or community. People who don’t have achoice feel they are denied their independenceand dignity. It is not what people want26 ordeserve. People with long-term care needs wantto remain at home as long as possible. If thathome represents an unacceptable health risk,they want to be in as homelike a place as possi-ble where they will retain their independence,

17 Data provided to the Assisted Living Work Group of the Pennsylvania Intra-Governmental Council on Long-Term Careby the Pennsylvania Department of Public Welfare and Governor’s Budget Office.

18 Newcomer, R.J., Harrington, C., Tonner, M.C., LeBlanc, A., Crawford, C.S., Ganchoff, C., Wellin, V., Medicaid Home andCommunity Based Long Term Care in Pennsylvania, Department of Social and Behavioral Sciences, University of California,San Francisco, May 2000. Comparing non-MR HCBS waiver programs to Medicaid nursing facility ratios, in 1997 inPennsylvania the number of waiver participants was only 4 percent of the number living in institutions. Id., p. 28.

19 Merlis, Mark, Financing Long-Term Care in the Twenty-First Century: The Public and Private Roles, Commonwealth Fund, p. 4.20 Newcomer, R.J., Harrington, C., Tonner, M.C., LeBlanc, A., Crawford, C.S., Ganchoff, C., Wellin, V., Medicaid Home and

Community Based Long Term Care in Pennsylvania, Department of Social and Behavioral Sciences, University of California,San Francisco, May 2000. Comparing non-MR HCBS-waiver programs to Medicaid nursing facility ratios, in 1997 inPennsylvania the number of waiver participants was only 4 percent of the number living in institutions. Id., p. 28.

21 Id.22 Assisted Living: Long-Term Care and Services Discussion Sessions and Findings, February 1999, Pennsylvania Intra-Governmental

Council on Long-Term Care, p. 14, quoting the April 1999 State Long Term Care Profiles Report.23 Utilization by Facility, January 1 through December 31, 2000, PA Department of Health, Bureau of Health Statistics

(Based on the number of patient days paid by Medicaid).24 PA Department of Public Welfare, Aging Waiver Enrollment Records for FY 1999–2000.25 This funding is not part of the Medicaid long-term care funding and personal care is, by definition, not considered

long-term care.26 Assisted Living: Long-Term Care and Services Discussion Sessions and Findings, February 1999, Pennsylvania Intra-Governmental

Council on Long-Term Care.

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and supports to persons with disabilities.30

Finding that a public funding system that offersinsufficient home or community-based optionshas the effect of segregating persons with dis-abilities from the rest of society, the SupremeCourt required states to eliminate the institu-tional bias from their public spending.31 TheOlmstead decision is comparable to the 1956 U.S.Supreme Court decision in Brown vs. The Board ofEducation.32 It not only requires states to remedytheir policies that segregate but also calls forstates to do so with the same kind of “all delib-erate speed” standard that Brown required fordesegregating schools.33 It is by this standardthat states will be measured in evaluatingwhether they are appropriately and expedientlyresponding by developing community-basedservices for persons who have been or will beinappropriately placed in medical institutions.34

As noted earlier, Pennsylvania has made significant strides in recent years. The situationdescribed above has improved from where ithad been just a few years ago. Some importantsteps that Pennsylvania has recently taken tobegin to address this problem include:

• Increasing HCBS services funded throughtobacco settlement funds;

• Limiting Medicaid funding for new nursingfacilities, so that new funds will be used forhome and community-based long-term care;

• Establishing the Bridging Program to addressneeds of persons with resources higher than

privacy, dignity and freedom of choice.27 Thishas not been possible in Pennsylvania, exceptfor our most affluent citizens.

Since 1997, the Pennsylvania Intra-GovernmentalCouncil on Long-Term Care has reported thatPennsylvanians overwhelmingly want to remainindependent and at home as long as possible.They want respect and dignity as well as con-sumer choice. The Council’s reports were devel-oped from information gathered during severalsets of structured discussion groups heldthroughout the state over four years.28 The phi-losophy of consumer choice drove the partici-pants’ responses: people want to have controland choice concerning their long-term careneeds. They believe that funding should bedirected to those long-term care services theyneed and want, rather than to those servicesthat have traditionally received the largest shareof funds. They believe long-term care and serv-ices should include a combination of supportiveservices and personalized assistance servicesdesigned to respond to individual needs ofthose who need help with activities of daily liv-ing and instrumental activities of daily living.

In addition to the fiscal and policy reasons forimproving access to quality home and commu-nity-based services options, is the 1999 U.S.Supreme Court case L.C. v. Olmstead.29 The Olm-stead case requires all states, including Pennsyl-vania, to rethink how they use the publicresources available to them in providing services

27 Assisted Living: Long-Term Care and Services Discussion Sessions and Findings, February 1999, Pennsylvania Intra-GovernmentalCouncil on Long-Term Care.

28 Id.29 Olmstead v. L.C., 119 S.Ct. 2176 (1999).30 Letter to State Medicaid Directors, January 14, 2000, Department of Health and Human Services, from Timothy West-

moreland, Director of Center for Medicaid and State Operations, HCFA, and Thomas Perez, Director, Office for CivilRights, HHS.

31 The decision was grounded in the 1990 Americans with Disabilities Act.32 The Olmstead Decision: Implications for Medicaid, Kaiser Commission on Medicaid and the Uninsured, March 2000.33 More recently, President Bush has announced the New Freedom Initiative: Fulfilling America’s Promise to Americans

with Disabilities. Goals of this initiative are to: “Ensure that existing federal resources are used in the most effectivemanner to swiftly implement the Olmstead Decision and support the goals of the ADA” and evaluate “policies, pro-grams, statutes, and regulations to determine whether any should be revised or modified to improve the availability ofcommunity-based services for qualified individuals with disabilities.” http://www.hhs.gov/newfreedom/

34 The Olmstead Decision: Implications for Medicaid, Kaiser Commission on Medicaid and the Uninsured, March 2000.

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the Pennsylvania Medical Assistance Programpermits;

• Hosting the Home and Community-BasedServices Fall Planning Series and establishinga HCBS Stakeholders Planning Team;

• Expanding medical assistance for workerswith disabilities;

• Implementing a nursing home transitiongrant;

• Developing and promoting a Long-Term CareHelpline and Web site;

• Developing a brochure for Medicaid waiver-funded HCBS;

• Developed estate recovery regulations and abrochure for the general public.

However, we will not realize the potential of allthis important work, or work towards a paradigmchange in how we pay for and provide long-term care services, if we do not also aggressivelyeliminate the barriers that consumers face whenthey attempt to use publicly funded HCBS serv-ices in lieu of publicly funded nursing facilities.

IV. What barriers do consumers facein trying to obtain services in theirhome or community?For the last year, the Barriers Elimination WorkGroup of the Pennsylvania Intra-GovernmentalCouncil on Long-Term Care has worked to iden-tify barriers that consumers face in accessinghome and community-based services. Asdescribed in the Introduction, the 22 barriersidentified fell into several groups: 1) procedural,2) informational, 3) systemic, etc.

The procedural barriers include the problemsconsumers face applying for and becoming eli-gible for services. The applications all differ, theprocesses all differ, and the informationrequired by funding sources differs. The need forlong-term care services is immediate, but theapproval process is lengthy and complicated.Those who need services are not able to imme-diately obtain services under most programs andthis is a barrier. These are the barriers that theWork Group recommends be eliminated first.

The informational barriers include the lack of

understanding about existing home and com-munity-based services, the lack of publicityabout home and community-based services, themultitude of different programs, and the welfarestigma of receiving services from the Depart-ment of Public Welfare.

The systemic barriers include the lack of uniformity of services available under the pro-grams, the lack of services available until onehas deteriorated to “nursing home eligible,” thelack of coverage of certain services, the narrowcategories of coverage under some programs,and the lack of financial support for housingcosts where inability to pay those costs wouldcause unwanted institutionalization.

A. Procedural Barriers

It can take months and months for personsneeding publicly funded home and community-based services to establish their eligibility andbegin to receive services, despite their bestefforts. Most nursing home eligible people can-not exist for that period of time without thesecritical services. Nor can their families take timeoff from work to fill the gap until verificationinformation is amassed, applications are finallyprocessed, and services are arranged. Nursingfacilities are able to and permitted to assume therisk that a person will not be found functionallyor financially eligible for publicly funded servicesand, consequently stand ready and willing to pro-vide immediate bundled services, assist in theMA application process, and receive retroactiveMA payment. The lengthy procedural barriers forboth MA and HCBS eligibility mean that HCBSare not truly an option for most eligible peoplewho are instead forced to seek the more imme-diate admission to a nursing facility. TobaccoSettlement funds have created significantlymore HCBS, but until this barrier is eliminated,waiver services may go unclaimed and nursingfacility occupancy will remain high. It is for thisreason that the Work Group feels this problemdeserves the highest priority to resolve.

The process for applying for and establishingeligibility for state or federally funded home andcommunity-based services programs is unduly

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the surplus of available beds in the state’slicensed facilities.35 By considerable contrast,there have been persistent (although declining)waiting lists for obtaining home and community-based services in one’s home. In the fall of2000, it was estimated that approximately 1,670nursing home eligible persons age 60 or overwere on waiting lists for receiving services intheir homes.36 Some 4,800 other persons age 60or over were not nursing home eligible but wereon waiting lists for supportive services in theirhomes.37 The Work Group hopes that the influxof PDA waiver slots due to the Tobacco Settle-ment funds will help improve the availability ofthis waiver.

As stated above, nursing facilities are often ableto provide immediate access, through a form ofpresumptive eligibility. The facilities assume therisk that the person will not be found Medicaideligible or have a family member do so. Theeffect is that those who appear like they will beeligible are treated as eligible and services arestarted immediately. Nursing homes subsequentlycomplete all the necessary paperwork to ensurethat they receive retroactive payment. This isnot presently possible for those who wish toremain in and receive services in home or com-munity-based settings. Even though CMS hasauthorized states to make interim services avail-able, Pennsylvania is not doing this.38 Addition-ally, many HCBS providers are not permitted ornot able to assume the risk that the applicantwill be found ineligible.

Attached as Exhibit A is the chronology of areal-time example of the lengthy process forapplying for home and community-based servic-es. In this case, it took almost 12 months for a

burdensome at best. The application for servic-es differ from program to program, the processfor applying for services differs from program toprogram, and the information required by fund-ing sources differs from program to program.Even if one follows all steps necessary to qualifyfor services, it is challenging to obtain servicesbecause the portals to the system are fraughtwith miscommunication, misunderstanding, andother problems. Merely completing the applica-tion process can often be so cumbersome thatapplicants fail to get needed services solelybecause they were unable to understand orswiftly produce what is needed. No applicant isable to obtain prompt services, making homeand community-based services an infeasibleoption for most being discharged from a hospi-tal or other healthcare institution.

Barrier 1: The process for determiningeligibility and arranging for and start-ing services takes too long.

In order for home and community-based services to be a meaningful alternative to place-ment in a nursing facility, they must be a practi-cal alternative. When it takes months to applyfor and implement services under a home andcommunity-based services waiver program, thewaiver services cannot be part of a dischargeplan from a hospital or rehabilitation facility.Few can dispute that when people are in needand/or in a crisis they’ll use and choose thequickest, most accessible, and readily availablesolution to their problem, even if they wouldnot have otherwise selected that option.

Another factor that makes getting services in anursing home far more swift and hassle-free is

35 Although Pennsylvania’s licensed beds per 1,000 persons aged 65 and older are 51.2, just below the national averageof 53.1, the homes are generally not filled to capacity. On the whole, the supply of beds in facilities, even the moreresidential settings, is at a surplus, making these settings far more accessible to a person with an immediate need forservices. Pennsylvania’s licensed personal care beds per 1,000 persons aged 65 years and older is above the nationalaverage. Pennsylvania has 31.7 beds per 1,000 persons aged 65 and older vs. a national average of 24.3. PersonalCare Homes are, on average, only at a 65 percent capacity.

36 Current information provided by the Pennsylvania Department of Aging.37 Id.38 Dear State Medicaid Director Letter # 4 in the Olmstead series.

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woman who wanted to remain at home and wasclearly eligible to obtain HCBS with the help ofan attorney. On average, it can take anywherefrom 3–4 months to 10–12 months to get fromneeding or wanting HCBS to actually havingHCBS. The example case, however, is illustrativeof the delays faced by far too many applicantsfor HCBS.39

Work Group Recommendations:

• Processing of completed MA applications forHCBS must be expedited. Interim MA cover-age of HCBS as authorized by CMS must beprovided within three days of submission.

• The CAO, or some more consumer-friendlyentity, must advise applicants of what is stillneeded to complete incomplete applicationswithin three business days of submission andassist consumers to obtain that information.

• State funds or Olmstead interim funding (thefederal government will pay up to 180 days)should be used to provide interim presump-tive eligibility services for HCBS.

• Functional eligibility must be done moreexpeditiously or allow the draft care plan tobe used to start services under the presump-tive eligibility model, with AAA to do follow-up to verify.

Barrier 2: There is nothing simple orseamless about it: applying for servic-es is too convoluted.

Presently “waiver programs” are identified asdiscreet, distinct “programs.” This makes apply-ing for home and community-based services acomplicated process. First, a consumer must tryto determine which waiver program to try toapply for. Procedurally, locating the appropriateapplication to complete and the appropriateagency through which to complete and submitit is difficult. The burden is on the consumer toidentify his/her needs and the costs of providing

those services (to demonstrate that the costsare less than receiving those services in a nurs-ing facility) and then to locate the agencythrough which to apply for services and funding.This is particularly true for under 60 years oldwaiver applicants.

The system must become simple, seamless, andmuch, much easier to apply for. The consumerand/or family know that long-term care servicesare needed for the applicant to remain in thecommunity. Initially that should be all the con-sumer should need to know. The consumer’sarticulation of this need should trigger an appli-cation for available services from appropriateprograms. Application should be made througha single, simple application — available on theWeb, through the Hotline, or from a variety ofother sources. The state should then determinewhat program or programs would be mostappropriate for the applicant and should assistthe consumer in obtaining any additional infor-mation that is necessary. This would eliminate apresent problem that an individual who mistak-enly applies for services through one waiverprogram must apply anew to a different waiverprogram, if the first waiver program is found tobe inappropriate.


• Home and community-based services shouldbe generally advertised and promoted withoutdemarcating different waiver programs thatcover different services for different popula-tions.40 Consumers should simply apply foravailable services and an overall benefits/programs check should be completed.

• A single, simple, seamless application shouldbe used for all long-term care services, healthcare and the PACE/PACENET Program.

39 Although a small part of the delay was due to the family having trouble finding and amassing the voluminous documentation that is necessary, the lion’s share of the delay was due to miscommunication or non-communicationby the CAO.

40 Some of the programs are exactly the same in terms of who they serve and what they offer, with funding streams andeligibility requirements differing.

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In the works since the Barriers EliminationWork Group began:

The Department of Public Welfare has madeavailable a uniform on-line application forhealthcare for children and pregnant women(COMPASS). It is anticipated that within 6–18months, consumers will be able to completeand submit MA eligibility applications over theInternet. Whether this will be on a shorter, moresimplified application form for which less verifi-cation is required is unknown. The applicationfor long-term care, but not waiver programs, isto be included by 2002. This, however, does notaddress the income and resource verificationneeded for long-term care.

Barrier 4: The amount of time toobtain functional determinations mustbe reduced and clear eligibility crite-ria must be established.

The timeframes for obtaining face-to-face functional assessments are impracticable ifhome and community-based services are goingto be a real alternative to nursing home care.Presently an assessing agency has two weeks todo its assessment after it has received a referralwith the doctor’s paperwork (the MA-51). Get-ting the MA-51 back from the doctor’s officecan alone take weeks. As a result, the timelapse from the date of referral to the date ofassessment can be a good six weeks or more.Once the assessing agency is done assessingfunctional needs, the application goes to thestate for its determination as to whether theapplicant meets the particular waiver’s function-al requirements. There is no deadline for thestate to respond and, consequently, applicantscan wait months to receive a decision onwhether they will be functionally eligible for aspecific program.

The explicit admission criteria for a given program are often not articulated. The state orcontracting agency has discretion to determinewho will be served. Thus a person with a dis-ability needing attendant care, who is otherwisefinancially and functionally eligible, must wait to

Barrier 3: The requirements for making a Medicaid application “com-plete” are overwhelming.

Presently, the applicant is required to compileextraordinary amounts of documentation andverification to prove their functional and finan-cial circumstances. They generally have to do sowithout assistance, as the CAO staff will notassist them, instead denying the application ifthe documentation is not produced. (SeeAppendix A.) Many who need services aredenied eligibility due to inability to meet thepaperwork requirements. Many of those end up,instead, in nursing facilities, which have staff toassist in the documentation necessary to secureMA payment for their facility.

Much of the verification necessary to qualify forHCBS could be more simply and swiftly obtainedby the CAO or could be directly obtained elec-tronically by the state from other state and fed-eral agencies with which the state already hasarrangements. For example, the face and cashsurrender values of life insurance policies couldmore simply and swiftly be obtained by a countyassistance office caseworker with direct connec-tions and repeated relations with an insurancecompany than by a consumer who has no ideaof how to do so. Similarly, when the statealready has access to Social Security Adminis-tration resources to verify an applicant’s income,the state can more simply and swiftly obtainthis information on its own than by placing theburden on the applicant to locate the source ofthe information, make a request, await aresponse, and submit the response to the state.

Work Group Recommendation:

• The procedural barrier of substantiating finan-cial status must be eliminated by reducingthe burdensome verification requirements (tothe extent permissible under federal law), byrequiring CAO personnel to verify all informa-tion that is independently verifiable, and byproviding personnel to assist consumers andfamilies in getting documentation and infor-mation necessary to apply.

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Barrier 5: There is a significant lack ofinformation and clear understandingby the consumer about what HCBSare, how to access them.

Too many consumers who need long-term careand services are unaware that:

• those services are available in the home orcommunity in a variety of settings;

• there are people available to assist them inobtaining those services; and/or

• for many, those services are partially subsidized or free.

It is no wonder that people are either confusedor unaware of their long-term care options. Thetypes of services a person can receive dependon their level of care needs and the setting inwhich they would receive them.42 There are mul-tiple funding sources for long-term care services:Medicare, Medicaid, state funds, personal funds,and private insurance. There is no uniformity ofbenefits, coverage limits, medical necessityrequirements, or terminology among the third-party payers of long-term care. Those with long-term care insurance are often unaware of cover-age limits and those without it are often unawarethat other funding sources are available.

The options for long-term care are many, butthey are confusing and often unknown, andonce known, are often overwhelming. This isexacerbated when there is a sudden need forlong-term care after an unexpected hospitaliza-tion. Families are anxious, emotional, and underintense pressure to immediately arrange long-term care because of an imminent discharge.Trying to understand options in such a situationis extremely difficult. This problem is madeworse by the fact that too many social workers,discharge planners, hospital administrators,

see if the state’s contracting agency will deter-mine that s/he can safely be served in the com-munity (a CMS waiver requirement), can self-direct their care, etc. These agencies do so,however, without explicit criteria to make thesedeterminations. Although appealable, thisdetermination can be critical for consumers andcan impact how much further delay may result.41


• There must be prompt timeframes for stateand contracting agencies to evaluate appli-cants and render decisions on providingservices. Existing timeframes must be short-ened to insure swift entry into home andcommunity-based services programs.

• There must be formalized criteria, developedwith stakeholders input, to determinewhether a person who is functionally andfinancially eligible, should be able to receiveservices at home.

• Distinct timeframes for initiating servicesmust also be articulated as part of care plan-ning. Delays in arranging services are oftenincurred after a consumer is finally foundfinancially and functionally eligible andapproved for HCBS.

• The state should be maximizing the possibilities of interim services as describedin the CMS’ Dear State Medicaid Director let-ter on Olmstead, instructing states to use up to180 days of interim funding to begin imple-menting available services while locatingproviders for unavailable services.

B. Informational Barriers:

In order to access home and community-basedservices, a consumer must be informed of whatservices are available and how to get them.

41 For example, where the state finds that the existing level of care an applicant is receiving by existing providers is inad-equate, the time it takes to staff up for additional hours or challenge whether additional hours should be imposedcan be great.

42 For instance, Medicare will only pay for very limited skilled nursing facility care, but Medicaid will pay for lengthy nursing facility care if the person is “nursing facility eligible.” Medicaid will pay for HCBS in the home, but generallynot in a personal care home or assisted living residence.

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Medicare Supplement policies. This wouldpermit consumers to better understandcoverages, durations, caps, and gaps andto feel more comfortable about purchas-ing such coverage.

� With regard to publicly funded care andconsumers, the Commonwealth shouldhave a single, seamless waiver applicationprocess to apply for all long-term careservices. The information needed from theconsumer must be clearly and understand-ably stated in the application.

� The TV portion of the media campaign shouldmodel itself after the very successful CHIP/MA commercials, running with very popularprogramming watched most by the targetgroup and prominently promoting a toll-free informational and assistive hotline. Itshould be done statewide.

� The Commonwealth should have a dynamic webpage, which permits the user to enter dataon needs and county location and receivecustomized information on how and whereto apply for available programs for whichthe consumer appears eligible. Theinputted information should flow into thesingle, simple application to permit con-sumers to apply online. (This could besimilar to the Commonwealth’s COMPASSinitiative.) Courteous trained staff shouldfollow up with consumers to help themcomplete unfinished portions and obtainneeded verification information.


As of December, 2001, the state has launchedthe Long-Term Care web site and has staffedthe Long-Term Care Toll-Free Helpline. Thesetools are means to provide answers to ques-tions about what services are available. They donot provide assistance beyond information andreferral. The Helpline staff members don’t assistin applying for services. The web site is notinteractive and does not yet include onlineapplications. This has been a joint effort toPDA, DPW, PID, and DOH. It is a good first step,but needs to be expanded. The Department of

health plan case managers, and others in posi-tions to direct consumers to services in thehome are also unaware of the existence of abroad array of services available through publicand private funding. If they are aware, theyknow that these services often take months toarrange, and hospital or rehabilitation center’spayment systems cause intense economic pres-sure to discharge the patient. The quickest placeto discharge a patient is to a nursing facility.


• Pennsylvanians of all income levels need tobe educated and informed of all their optionsat critical decision points, e.g. during a hospitalstay prior to discharge, when they request NF,by physicians, at Senior Citizen Centers, etc.

• Information should be targeted to consumersnot only before they need long-term care,but also at those crisis points when theysuddenly need long-term care services. TheCouncil focus groups of consumers consis-tently said the most critical time for thisinformation is when someone has suddenlybeen hospitalized, needs long-term care, andthe hospital is putting pressure on the familyto move the consumer out. It is critical thatthis information be available at all hospitalsand doctors’ offices.

• Not only consumers need to be educated butalso discharge planners and other essential staff athealthcare institutions need to be informed. The pri-mary message should be: “When you needlong-term care, you have choices. Here theyare. Here is how to access services.”

• Information needs to be available in a variety of formats: written, web-based, newspaper,radio, television, bus signs, etc. To changethe paradigm, we need a media blitz suchthat the public no longer automatically asso-ciates the need for long-term care serviceswith nursing facilities. This will take a sus-tained, multimedia effort.

• Information needs to be simple and understandable.� With regard to private pay consumers, the

Insurance Department should work torequire standardized long-term care insur-ance policies, similar to the standardized

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Health is conducting a large media outreachcampaign to publicize the availability of the website and the hotline.

Additionally, the Department of Public Welfarehas published and posted on its web site con-siderable information about the home and com-munity-based waivers. These materials, however,refer readers to the long-term care helpline,where they may have additional questionsanswered and eventually be referred further forinstructions on application for services.

Barrier 6: There is a lack of knowledgeabout how to access home and com-munity-based services.

The current piecemeal approach to home andcommunity-based services reflects the state’scontinued interest in adding services and plug-ging coverage gaps. However, the result is aconvoluted and perplexing system that is mysti-fying for most consumers. There is a significantlack of knowledge about how to access waiverprograms, where to apply, how to apply, whatthe criteria are, etc.


• The state should embark on major educationand outreach campaign on HCBS generally.This should include development of a glossy,attractive, non-DPW-looking informationpacket that gives HCBS options that arecommunity-specific and could be used by theAAAs, discharge planners, CAOs, providers,DPW to MA and Health Choices plan to helpinform consumers of their long-term careoptions. This packet should describe all pro-grams and how to apply, using the single,simplified uniform application suggestedabove. This packet should be used with themedia campaign and the hotline describedabove.


The newly launched Long-Term Care web siteand Long-Term Care Toll-Free Helpline aredesigned to help inform consumers of their

long-term care options and how to apply forservices. An attractive HCBS waiver pamphlethas been produced by DPW describing the vari-ous waiver programs. While the Long-Term Careweb site and Toll-Free Helpline as well as thebrochure provide information about servicesand programs available, they do not providestep-by-step details on getting through or assis-tance with the application process.

Barrier 7: There is a considerableamount of stigma surrounding thehome and community-based servicesprograms.

HCBS waivers are part of the Medicaid Program,which until recently has been closely tied withwelfare. Our historic approach to welfare pro-grams has included the goal of dissuading useof welfare programs. Since the 1500s, it wascommon for applicants to be given meager ben-efits, required to go through a lengthy anddemeaning application process, and made tofeel badly about using the services. While nolonger the goal, the system remains one inwhich consumers feel dissuaded, demeaned,and embarrassed.

Older persons needing long-term care serviceshave spent their entire lives trying to be self-sufficient and avoid welfare. They have no qualmsabout getting health care through Medicarebecause they feel they have earned it. They’vepaid their taxes for years and years so that Medi-care would be there for them when their employ-er-based insurance ended. There needs to be asimilar feeling about using Medicaid-fundedHCBS. People have paid their state and federaltaxes and used their private resources to providefor their long-term care needs. As their resources/income become reduced and their long-termcare needs increase, these Medicaid programsfunded by their tax dollars exist to assist themto remain at home just as Medicaid would assistthem to live in a nursing facility. Considerableattention is needed to shift attitudes so thatshame is not a barrier to care and services.

Presently, we identify Medicaid “waiver programs”

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menu of services.• Use focus groups to test the renaming,

repackaging, applications, brochures, andprogram name and lingo used.

• Use focus groups to test the consumerfriendliness and helpfulness of all groups thatcome into contact with an applicant/familymember: the Hot Line Staff, Intake Workers,AAA staff, etc. Use consumer satisfactionsurveys thereafter.

• Funding streams should be seamless withone application.

• The entire thrust of the program must changeto one that is consumer friendly, helpful,encouraging, and non-bureaucratic, etc.

C. Systemic Barriers

There are 10 different Medicaid home and community-based services waiver programs.There are at least six different state-funded pro-grams that also provide home and community-based services. These programs are all designedto meet the needs of different populations.They offer different service packages, have dif-ferent caps on services, and their services arenot available statewide. Another major systemicbarrier for most of these programs is that onecannot access services until one has deteriorat-ed to the point of meeting the clinical measureof “nursing home eligible,” a point many whomeet the criteria would never want to believethemselves to be in. Another systemic barrier isthe virtual lack of financial support for housingcosts where a person’s inability to pay thosecosts would cause his/her unwanted institutionalization.

Barrier 8: The lack of uniform availability of a comprehensive pack-age of HCBS across the state.

There are three problems with the availability ofa comprehensive package of HCBS across thestate for consumers needing long-term careservices:

• Not all the waivers contain comprehensiveservices or have been updated to add newneeded services. For instance, the AIDS waiv-

or state-funded programs as discreet, distinct“programs.” By contrast, we should be advertis-ing and promoting home and community-basedservices and not demarcating different pro-grams that cover different services for differentpopulations. Some of the programs are exactlythe same in terms of who they serve and whatthey offer; the only difference is fundingstreams and corresponding financial eligibilityrequirements. In other words we create a “waiv-er program for the poor” and then wonder whypeople don’t want to participate. Years ago thePDA began the Aging Block Grant as a way ofcombining the funding streams at the statelevel and offering “services for the elderly” atthe local level. For all intents and purposes, aperson who gets services from the AAA doesn’tknow and may not care what the fundingstream is. Yet, they also do not want to belabeled or stigmatized as participating in a pro-gram for the poor. Because perception of manyessential services as “welfare” poses a seriousbarrier to accessing care, the state must workto eliminate the stigmatizing aspects of thehome and community-based services systems.


• The program must be renamed and repackaged and all vestiges of the demeaningstigma of needing “welfare” need to beremoved from the program.

• The program must have less apparent identification as “welfare” program andefforts must be made to minimize contactwith “welfare” offices.

• The application, the brochures, and themedia campaign all must be glossy, attrac-tive, non-bureaucratic-looking, such as hasbeen done with the CHIP Program.

• Language and terminology must be reassigned. Terminology such as “nursinghome eligible” is a turn-off to many eligibleconsumers. Many individuals would neverconsider themselves “nursing facility eligible”even if they meet the clinical criteria. Instead,use “in need of long-term care services.” Wealso need to rid vocabulary of the term“waivers;” instead call it a program, or a

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service areas.

Barrier 9: More services needed forthose not yet nursing home eligible.

While it is understandable for the state to wantto target its funding on service for those withthe greatest care needs, it is counterproductiveto do this without also funding the services thatwould prevent others from deteriorating to thepoint of having great care needs. While personalcare homes are available and the lottery fundedOPTIONS program provides services to personsover 60 who are not yet nursing home eligible,this is not enough. Lottery funds are insufficientto meet the needs for these services by olderPennsylvanians and are not available for youngerpersons. Personal care homes are not paid tomeet great personal care needs of residents.

By way of example, consider a 59-year-oldwoman who requires assistance with medicationself-administration and monitoring her bloodsugar levels and health status, but who is notquite nursing home eligible. The failure to pro-vide her with the assistance she requires will, intime, cause her health to deteriorate to thepoint where she will require even greater assis-tance and meet the standard of being “nursinghome eligible.” This is just not sound fiscal poli-cy. A continuum of long-term care servicesneeds to be provided for those without theincome and resources to pay for them. Wherepossible, the state should leverage as muchfederal funding as possible to do so.


• Personal care services, subject to prior authorization should be added to the Medic-aid state plan. This would permit the state toprovide services with cost controls to peopleof all ages with limited income and resourcesto prevent unnecessary deterioration. Byadding this to the state plan, the federal gov-ernment would pay for more than half thecosts.43

er is very outdated. Some waivers containservice caps, others do not.

• Some services are not available in somecounties. For example, Adult Day Care is notavailable in all counties. This is a critical serv-ice available through the PDA Aging Waiver.For many, this is an essential service compo-nent necessary to support consumers in theirhomes rather than in a nursing facility.

• In other counties, some services on the waiver menus are available but with such lim-ited capacity that there are long waiting lists,effectively making that particular home andcommunity-based service unavailable.

Comprehensive waiver programs are not trulyavailable statewide unless the services availablethrough those waivers are also available in allcounties. It is essential that efforts be taken toinsure that the services available through awaiver actually be equally available across thestate and throughout the different counties.There should not be counties where certainwaiver programs are effectively not available.There should also be more comparabilityamong the waivers for long-term care servicesneeded by all consumers.


• Counties should be surveyed to determinethe existence and availability of servicesthrough all the long-term care programs.

• Waiver programs should be analyzed todetermine whether additional services shouldbe added to make waivers more uniform andto better meet consumers’ needs. Programsshould be modified and improved.

• Where service gaps or capacity exits, theCommonwealth should work with counties toaddress this problem.


The Department of Public Welfare has beenstudying several of the waiver programs to eval-uate the equity of access to services within the

43 Twenty-six states offer personal care services through their state plans.

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consumers refuse waiver services. This shouldbe analyzed to determine if estate recoveryor other policies are deterring eligible con-sumers from using needed services andshould be modified. Those who reject HCBSshould be tracked to determine how theymet their need for long-term care services.


The final regulations on Estate Recovery havebeen published. Additionally, educational mate-rials on estate recovery developed by the IGCLTCEstate Recovery Work Group are being printed.

Barrier 11: There is an entitlement tonursing facility care but no entitlementto home and community-based care.

For years, many counties have had a shortage ofhome and community-based services. In recentmonths, waiting lists for entering waiver pro-grams have declined. However, waiting lists doremain. Missouri has recently made the commit-ment to provide home and community-basedwaiver services to every eligible consumer, sothat all consumers can choose between com-munity-based services vs. those received in anursing facility. Massachusetts is consideringlegislation to do the same. Oregon and Mainehave also tried to ensure that there were morewaiver services available than were needed. Theresults have been gratifying. Most consumerschoose waiver services, at far less cost to thestate.44 There is no overflow to keep nursingfacility beds filled. Maine, for instance, hasserved far more people, and spent less on long-term care, by ensuring a more than adequatesupply of waiver services. This is a win-win-winsituation. Consumers receive services where theywant to, the state saves money, and the stateeliminates its institutional bias for long-term carein compliance with the Olmstead decision. Ade-quate funding of community-based services will

• The Medicaid state plan should also beamended to permit more than the presentlimit of 15 home health visits/month, to per-mit a higher number that meets the needs ofthose needing long-term care but not qualify-ing for Medicaid HCBS, and to preventunnecessary institutionalization. Soon mostof the state will be in HealthChoices and theHMOs can appropriately manage the numberof home health visits.

• Adequate dedicated funding should be provided for persons with long-term careneeds, and limited means who do not qualifyfor lottery, Medicaid, or waiver services.

Barrier 10: Misunderstanding anddislike of estate recovery program.

Until Fall 2001, Pennsylvania did not have clearregulations implementing the federal Medicaidestate recovery requirements. The old systemwas misunderstood and strongly disliked byconsumers. While the regulations clarify howestate recovery will work, consumers will needto understand how estate recovery works. Theyare currently concerned that the receipt ofhome and community-based services will forcethem to lose their homes during life or preventany family from inheriting the home. And, eventhough the regulations do not call for loss ofhouse or preclude certain people from inheritingthe house, estate recovery continues to remaina significant reason for some to reject neededservices. Even with an understanding of estaterecovery, there are those consumers who willreject needed services.


• Focused educational outreach and consumereducation materials need to be developed toexplain estate recovery to potentially eligiblewaiver applicants.

• AAAs should systematically monitor the take-up rate of HCBS slots and track why eligible

44 Federal waiver requests will not be granted unless the state can demonstrate that the cost of providing waiver servicesis equal to or less than that of serving consumers in a nursing facility. The Pennsylvania Department of Aging (PDA)waiver costs are about half of the cost of serving the same consumer in a nursing facility.

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nursing home.

Several states have begun to work with localhousing authorities to set aside Section 8vouchers specifically for this population. Othershave begun to provide state subsidies to assistwith housing costs for those residing at homeand receiving waiver services. Even with thestate housing subsidy these states are findingthat the total state costs are less than payingfor that consumer in a nursing facility.

The Commonwealth of Pennsylvania does provide housing subsidies for those lowerincome individuals residing in community-basedresidences like domiciliary care homes or per-sonal care homes. No similar subsidy is availableto those who wish to remain at home.

In order to prevent unwanted institutionalizationand to insure that home and community-basedservices, in practice, is an alternative to nursinghomes, the state must recognize the importanceof available and affordable housing.


• The Departments of Public Welfare and Agingmust collaborate with the PHFA to increaseaffordable housing options for persons withlong-term care needs. Dedicated funding andprograms should be devoted to this purpose.

• The state should also evaluate creative solutions to making services accessible on a24-hour basis to those choosing to reside athome. For example, one creative idea to beexplored might be clustering residents inhousing units in close proximity to eachother and hire a shared 24-hour aide to cir-culate amongst them.

• The state should pay for a housing subsidyto keep a consumer who qualifies for waiverservices in his/her home if the total statecost is less than the state cost of paying forthat consumer in a nursing facility.


The 2001–2002 Budget funded a housing coordinator to act as a liaison between housingauthorities and other housing resources and

also foster the growth of these community serv-ices and an adjustment in nursing facility beds.


• Pennsylvania should pass legislation similarto Missouri’s that would ensure that qualify-ing consumers could choose between havingtheir long-term care needs met in the com-munity or in a nursing facility.

• Pennsylvania should seek approval for anadequate number of waiver slots to meet thedemand for those services from qualifiedconsumers.


In June legislation was passed which permits theuse of Tobacco Settlement funds to pay thestate cost of Medicaid home and community-based services through PDA. Although the fund-ing can only be used for this waiver, it will sub-stantially increase the number of waivers avail-able through that program. For the most part,the waiting lists for most HCBS programs arepresently very low or non-existent. However,efforts must continue to insure the availabilityof HCBS especially as the option is made morereadily and easily available through implementa-tion of these recommendations.

Barrier 12: Unavailability of fundingfor housing.

Remaining at home with adequate services willnot be practicable where the home has not beenmodified to meet the changing needs of theconsumer. It will also not be practicable wherethe consumer’s income no longer covers thehousing, taxes, and utilities. This often occurswhen one spouse predeceases the other andthe income is cut in half. What was once afford-able housing, is no longer.

The lack of affordable housing is a considerableobstacle to remaining in the home or communi-ty. Historically, unmet needs for safe and afford-able housing have led to unwanted institution-alization. Medicaid will not pay for shelter andfood costs in the community, but they will in a

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Barrier 14: There is an inadequatework force available to staff the serv-ice needs of consumers who wanthome and community-based services.

Not unlike the situation in other long-term careand healthcare settings, home and community-based services providers are struggling thesedays to find the staff to provide the services.There are even occasions where available fund-ing goes unused and needy people go unservedbecause there are not workers to staff theircases. Addressing the work force issues is ahigh priority for the state. The Council’s workforce issue work group has been studying thisproblem. They have recently produced twodetailed reports documenting and quantifyingthe problems in the healthcare and homecarework force arena. This must remain a high prior-ity in order to insure that consumers in any set-ting are able to receive the services they need.

In addition, however, the work force disparitiesthat face home care workers must be addressed.There are disincentives, like lack of pay for timein transit between patients’ homes and lack ofreimbursement for mileage, that dissuade ahealthcare worker from choosing home careover facility-based care. In this arena, home andcommunity-based services work must be madecompetitive with nursing facility work.


• The recommendations of the IGCLTC Reporton Work Force issues should be followed.


This year’s state budget includes a direct careworker initiative. Included was:

• $3.4 million for improving recruitment-retention of direct care workers. These dollarswill be used by providers at the local level toaddress areas such as bonuses, training, ben-efits, and image of direct care workers;

sources of home and community-based services.

Barrier 13: Lack of publicly fundedoptions for eligible waiver consumersneeding the availability of 24-hourservices.

In order to keep under the cost caps requiredby Medicaid-funded waivers45, it may not bepossible to have services available in the homeon a 24-hour basis. Without the availability of24-hour services, it may not be feasible forwaiver-eligible consumers to remain at home. Atypical case is a woman in her 80s or 90s whocannot walk without assistance and needs to goto the bathroom several times a night. Becauseof falls or fear of falling, the consumer and/orfamily may feel that she cannot be left alone forperiods of time. She cannot go to an assistedliving residence or personal care home and con-tinue to receive her Medicaid-funded waiverservices. In order to receive waiver services, onemust be nursing home eligible. However, underPennsylvania law, one may not be nursing homeeligible and live in a personal care home orassisted living residence where 24-hour servicesare available. The only alternative for thewoman is to go a nursing facility.


• Assisted Living Legislation is needed thatwould permit consumers to receive waiverservices in a PCH or ALR and live in their ownunits and have the availability of 24-hourservices.

• Pennsylvania should obtain amendments towaivers to take cost caps to the maximumpermitted by federal law so that needs can bebetter met. (See discussion of Barrier #18).

45 Cost must not exceed nursing facility costs, but some of Pennsylvania’s waivers have even lower cost caps, e.g., thePDA waiver is 80 percent of nursing facility costs.

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when they are approved for HCBS and on aperiodic basis thereafter.

• A mechanism for consumer/family feedbackon the manner and reliability of home andcommunity-based services must be developedto monitor consumer satisfaction and obtaininformation on the quality of those services.

• Other outcome-based measurements andstandards should be developed and the qual-ity of the HCBS provided should be regularlyassessed and quality improvement effortsshould be undertaken when services arefound to be substandard.

• A 24-hour/day hotline should be establishedfor HCBS consumers for filing complaints andobtaining an immediate response in emer-gency situations. (Such a hotline is availablefor nursing facility residents and will soon beextended to personal care home residents. Itis perhaps even more needed for HCBS consumers.)

• A certification program and registry shouldbe established for HCBS agencies, so thatconsumers could be assured that someonecoming into their home to provide personalcare services has demonstrated competencyand has had and passed the appropriatebackground checks.

• A HCBS quality review advisory board shouldbe established to review and work on reme-dying evolving issues, reviewing quality out-come data and helping to insure the safetyand consumer satisfaction of those whoreceive home and community-based care,whether privately or publicly funded.


CMS has issued new guidance on Quality Assurance Monitoring for Medicaid-fundedHCBS. The CMS Protocol is designed for evalu-ating states and their compliance with CMSrequirements. This Protocol calls on states tohave quality assurance monitoring processesand tools. Each of Pennsylvania’s HCBS waivershas since developed a quality assurance andquality improvement team. However, there is nocoordinated system for monitoring and insuring

• funds to bring agencies together to sharebest practices; and

• funds for the development of apprenticeshipsfor direct care workers.

In addition, $1.5 million of IGT funds are designated to implement the recommendationsof the IGCLTC Work Force Issues Work Group.Discussion continues with a national foundationregarding the work force issue.

Barrier 15: There is no coordinatedsystem of quality assurance and quali-ty improvement in place for all homeand community-based services.

HCBS consumers are frequently nursing facilityeligible, and their very lives may depend onbeing able to receive quality home and commu-nity-based services. Because the services areprovided in their homes, in a relatively isolatedsituation, the potential for neglect, abuse andsubstandard care exists. Since consumers areso reliant on these services, and work forceshortages exist, services may be provided inand consumers may be more willing to acceptservices provided in a “take-it-or-leave-it man-ner,” without regard to consumer’s preferences,independence or dignity.

It is important that services be provided in amanner that is responsive to the needs andconcerns of the participants. It is also criticalthat there are quality assurance and qualityimprovement systems for home and community-based services. There must be a coordinatedsystem for monitoring and insuring the quality,courtesy, professional manner, reliability, etc. ofthe care providers and the consumer satisfac-tion across HCBS as a whole. Further, theprocess and its results must be incorporatedinto a public commitment to insuring consumersatisfaction.


• Ombudsman and Protection and Advocacyprograms must be extended and funded tocover home-based care. Consumers must beprovided information about these programs

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Barrier 17: Many people needingwaiver services cannot obtain thembecause they do not meet the narrowcategories of disability for the existingwaivers.

Notwithstanding the fact that Pennsylvaniapresently has 10 different waiver programs,there are many people who cannot get homeand community-based services because they donot fall within one of the narrow definitions ofpopulations served by one of the 10 waivers.47

As written, those with a physical disability thatis not a developmental disability and that devel-oped after age 22, cannot be served in anyexisting waiver program if they are under 60. Norcan persons who have had strokes or sufferedfrom another form of traumatic brain injury ifthey are under 60 even if they are nursing facilityeligible. They must go to a nursing facility toreceive comparable Medicaid-funded services.


• A complete study of needs and service gapsis needed to reveal who could be, but is notpresently served under the current waivers.As indicated by the study, additional waiversshould be sought from CMS.

• DPW should also explore with CMS if a generic waiver can be applied for, for thosenursing home eligibles that do not fit any ofthe existing waivers.


The state has expanded the Michael Dallaswaiver to include persons 21 years and older.DPW also applied to CMS without success for awaiver for persons with autism and traumaticbrain injury. CMS denied the waiver because ofthe grouping of the two disability groups. Sincethat time DPW has been trying to serve persons

the quality, courtesy, professional manner, relia-bility, etc. of the care providers or of consumersatisfaction across HCBS as a whole.

Barrier 16: The distribution of waiverservices across populations needs tobe proportional.

Most of the existing home and community-based services waiver slots are for consumerswith mental retardation.46 Despite this, there arewaiting lists for MR slots. Because this WorkGroup did not focus on MH/MR care and servic-es, these facts bear mention but not discussion.Many other waiver programs have limited slotsto serve the number of individuals in the needspopulation. And, some of the waivers are virtu-ally unavailable in certain areas of the state.


• A needs assessment by geographic areashould be conducted to determine the number of persons needing long-term careservices and the type of services and publicresources needed.

• The state should develop a plan to equitablyadd publicly funded waiver services by geo-graphic area and type of disability and toquickly meet the demand for those servicesstatewide and by waiver category.


The state is conducting a study of several of thewaivers to determine the adequacy of thewaivers across counties and across populations.

46 According to the Office of Medical Assistance Programs Statistical Report for Fiscal Year 1998–1999, the Commonwealth has 17,208 home and community-based services waiver slots with 10,864 of those being for the MRWaiver.

47 The most extreme example of a narrow waiver is the Elwyn Waiver that is for persons over age 40 who are deaf and/orblind and live in Delaware County. http://www.dpw.state.pa.us/omap/geninf/statreport/omapsr9899medwav.asp

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waiver participant would be approximately$240,000.

The Attendant care waiver program is administered with a maximum of 45 hours ofattendant care a week, even where more isneeded. Forty-five hours of attendant care is farbelow the cost of care in a nursing facility. Waiv-er programs must be flexible to meet the needsof the individual participants and not capped inan arbitrary manner for some groups far beyondwhat is required by federal law.

There was no clarity on whether the existingdollar caps were established to account foradministrative costs incurred in implementingthe waiver. The Work Group believes thatadministrative costs must be exclusive of thewaiver caps and should not be used to limit theamount of services a person can access. Thecost of care in a nursing home is not calculatedto include the administrative costs.


• The state should review the limits on existingwaivers and seek waiver amendments fromCMS to put all waivers at 100 percent of thecost of nursing facility care and to eliminateunnecessary service caps.

• The state should review service limits andeliminate those that are not justified by areason other than cost.

• The state should determine if additional services should be added to waivers.


The Work Group has learned that for all the existing waivers, the Department of Public Wel-fare is obtaining CMS approval to shift to aggre-gate cost caps. This would allow the waiver pro-grams to serve those individuals with needs thatwould exceed the cost of serving that person ina nursing home provided the overall costs tothe state do not exceed the overall costs ofserving all participants in nursing homes.

with autism and traumatic brain injury throughexisting waivers.

Barrier 18: Waiver services need to bemore comparable and the scope andeligibility for waivers needs to be maximized.

One of the requirements waived under a homeand community-based services waiver is thefederal Medicaid comparability requirement.This is waived so the state can provide moreservices to nursing facility eligible personsserved in the community than it does to otherMedicaid recipients. In seeking federal approvalfor the various waivers, DPW had to demon-strate to CMS that the group of persons forwhom the waiver was sought could be served inthe community at a cost equal to or less thanthat of serving them in a nursing facility.Because this was uncharted territory, limits toservices were established to ensure that thecost caps would be met.

Now that Pennsylvania has had experience withthe waivers, it is clear that this has led to somedisparity between waiver programs and a denialof essential services for some groups. Limitingservices to selected age groups and cappingdollar amounts at different percentages is nolonger justified.

For instance, the Aging waiver is capped at 80percent of the cost of caring for the participantin a nursing home, whereas other waivers arecapped at 100 percent of that cost. Maximizingthe scope and services available under thewaiver programs would insure that needs aremet while still meeting the federal cost caps.For example, setting the cost cap for all waiversat 100 percent of the cost of nursing home carefor that applicant would insure that none of theapplicant’s needs would go unmet because ofcost caps. However, because the cost caps arelinked to the applicant’s needs, they wouldinherently be different. Thus, 100 percent of thecost of care for an Aging waiver participantwould be approximately $40,000 whereas 100percent of the cost of care for a Michael Dallas

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passed in the House of the General Assembly.

Barrier 20: Inability to obtain publicfunding for services in assisted livingresidences.

As was discussed with Barrier #12, only thoseeligible for the SSI Supplement can receive pub-lic funding for personal care services in a per-sonal care home. However, nursing home eligi-bles may not be served there and one must benursing home eligible to receive Medicaid-fundedHCBS. Also, as discussed in Barrier #19 above,the present training, staffing, and enforcementstandards for PCHs are inadequate for a personwho is nursing facility eligible.

Over 30 states have passed legislation to licenseassisted living residences.48 Many of these samestates are using Medicaid-funded HCBS to serveconsumers living in assisted living residences(ALRs). ALRs can provide a residential settingwhere one can age in place, with serviceschanging in accordance with needs.


• Assisted living residences should be licensedand be capable of serving most nursing facili-ty eligible residents. Once this is done, HCBSwaiver services should be available in ALRsand for those PCHs that can demonstratecapacity and competency to safely providequality, consumer-directed services to nursingfacility eligible consumers.


As discussed above, DPW is operating a pilotprogram in Philadelphia to permit HCBS inselected PCHs.

Barrier 21: The Medicaid resourcelevel is too low.

The income levels for HCBS are much higher forwaiver recipients than they are for the sameperson applying for Medicaid who is not nursing

Barrier 19: Personal Care Homes/Assisted Living Residence standardsand enforcement need to be improvedbefore they can house waiver recipients.

Presently, state law does not permit a nursinghome eligible person to receive services in apersonal care home/assisted living residence.Yet, because of the lack of affordable housingand the need for some consumers to haveaccess to 24-hour-a-day care, these community-based residential options are an integral part ofthe long-term care continuum. DPW is operatinga pilot project in Philadelphia to determine thefeasibility of permitting a nursing home eligibleperson to receive HCBS in a personal care home.However, the conditions in some of the state’spersonal care homes make them totally inappro-priate settings for nursing home eligible individ-uals. Inadequate training standards, qualityassurance, services, and maintenance issues allraise concerns about the use of personal carehomes for waiver recipients. Yet, when a con-sumer can no longer live alone, a personal carehome offers the availability of 24-hour services.However, until standards and enforcement aresignificantly upgraded, personal care homes/assisted living residences should not be usedfor nursing facility eligibles.


• The Council’s Assisted Living Report recommendations should be implemented.

• Legislation is needed to license assisted living residences pursuant to the recentStakeholders’ recommendations.


DPW is reviewing and proposing new personalcare home regulations. The Auditor General hascompleted a review of enforcement activitiesand has made recommendations for improve-ment. An Assisted Living licensure bill has been

48 In Pennsylvania, anything can call itself assisted living. However, assisted living residences are presently licensed aspersonal care homes.

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means not having 24-hour-a-day services avail-able in the case of an accident or emergency, itis worth it for purposes of maintaining autono-my, dignity, and privacy. However, serviceproviders are reluctant to serve consumers whoassume risk, because they are concerned theywill be sued for negligence if something shouldhappen to the consumer. Also, under federallaw, the state must ensure that Medicaid waiverrecipients are provided for in a safe and securemanner. The Regional CMS office has refused toprovide guidelines on how much risk a con-sumer may assume and still have the state meetthe requirement of providing for safe andsecure services. They have left it up to Pennsyl-vania. Therefore, at present, it is very difficultfor a consumer to assume risk and receive waiv-er services. There are no clear and specific crite-ria for entry into home and community-basedservices programs. Reasonable minds differ onwhat services the consumer needs to have tobe served safely in his/her home. Additionally,there is little room for consumer preference,autonomy, or dignity where the criteria areundefined and left to the state to determine ineach case.


• In consultation with stakeholders, theDepartment of Public Welfare and the Depart-ment of Aging should develop assumption ofrisk standards for HCBS that meet federalguidelines while providing room for consumerpreferences, autonomy, and dignity.

• Pennsylvania needs legislation to provide forshared risk agreements, which protects bothconsumers and providers.

V. ConclusionRecently, Pennsylvania has taken a number ofimportant steps to change the institutional biasof its long-term care funding under Medicaid.This is critical to not only comply with the Olm-

facility eligible.49 A single person can be eligiblefor HCBS and have income of about $1,610/month. However, the Medicaid resource levelhas not been changed for over 10 years. Itremains at $2,000. There have been no cost ofliving adjustments. Had there been, theresource level would be over $2,800 today.50

The resource level is particularly important forconsumers living at home and receiving HCBS.Few people feel comfortable living in a homewithout a small nest egg to cover the cost ofmaintenance and repairs. However, the resourcelevel is so low that it permits only a few hun-dred dollars in the bank above the maximummonthly income level permitted under the waiv-er. People are reluctant to reduce their resourcesto such a low level and remain in their homewith inadequate funds to cover maintenanceemergencies, etc. Also, the resource level islower for people receiving Medicaid-fundedHCBS at home than it is for those receivingMedicaid-funded services in a nursing facility!


• The resource level should include a cost ofliving adjustment and a home maintenanceadjustment. New federal policies give statesthe flexibility to make this important policychange.

• The spousal impoverishment rules and otherrules employed in evaluating assets for nurs-ing home applicants should be applied toapplicants for home and community-basedservices waiver programs to insure that thereis equity and no disincentive to accept homeor community based care.

Barrier 22: There are no state or federal criteria for shared or negotiatedrisk.

To some people, avoiding unwanted institutionalization is worth taking chances. If it

49 For instance, the income levels for HCBS is 300 percent of the SSI level, which for one person is over $1,500/month,more than twice the federal poverty level.

50 http://www.westegg.com/inflation/

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systemic barriers that prevent and prolongunwanted institutionalization. Attention shouldbe paid to deinstitutionalizing those capable anddesirous of living in more residential settings. (Agrant has been secured to do so in limitedcounties, but it needs to be done statewide.) Inthis vein, appropriate nursing home residentsshould be periodically assessed and informed ofoptions as well as assistance available for transitioning.

The Work Group asks the Council to:

1. Accept and adopt this report.

2. Make public the findings and recommendations of this report.

3. Take steps to brief the legislature on the findings and recommendations of this report.

4. Refer this report to lead agencies for follow-up, asking them to report back to the Councilon what it would take to implement the rec-ommendations, what costs and timeframeswould be involved, and whether they would bewilling to implement the recommendations.

stead requirements, but also in recognition ofconsumers’ preference to remain in their homesas long as possible when they have long-termcare needs. It will also be essential so thatPennsylvania can use its limited resources toprovide publicly funded long-term care servicesto a growing number of people, without puttingundue strain on taxpayers. It is clear that thestate is committed to improving access tohome and community-based services through-out the Commonwealth.

Although efforts have begun as noted above,most consumers do not yet have a real choicebetween HCBS or a nursing facility because ofthe barriers articulated above. Although thesupply of waivers is increasing, they are not yetreadily available and swiftly accessible. Mostpeople cannot wait the months and months ittakes to secure them, once they become nurs-ing facility eligible.

It is essential that efforts to improve access tohome and community-based services focus oneliminating the informational, procedural, and

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E X H I B I T AThis is the chronology of a real-time example of the lengthy process

for applying for home and community-based services.

August 2000

• Client calls needing services and does not want to go to nursing home.• Refer client to AAA for assessment.• AAA sends MA-51 to applicant’s doctor for medical evaluation.

September 2000

• Calls to medical doctor to press for completion and return of medical evaluation.• Medical evaluation finally returned.• AAA assessment visit completed.

October 2000

• 10/3 – AAA finds level of care to be nursing facility eligible; finds locus of care to be a nursinghome. AAA is not sure client really wants to be at home and thinks client is better served in anursing facility.

• 10/12 – Client goes to a local nursing home because she could no longer wait for services.• 10/16 – Client transferred to local hospital for medical attention.• 10/17 – Client had surgery to have her leg amputated.

November 2000

• 11/6 – Client transferred back to nursing home.• 11/13 – Client left nursing home and returned home because she couldn’t stand to be there and

wanted to be in her own home.• 11/14 – Nursing and PT through Medicare began.

December 2000

• 12/7 – Case assessment meeting with AAA, client, and family to bear witness to client’s articulation of desire to be at home, not nursing home. Certification will be changed to locus ofcare home. AAA submitted MA application.

• 12/15 – Call from AAA that MA Application rejected because of failure to provide information.CAO sent two separate forms indicating missing information, but each stated different items.Provided list of all items on both forms to family to obtain documents and submit. Items due toCAO within 10 days.

January 2001

• 1/3 – Family members did not amass and send documents in time.• 1/9 – Notice from CAO that application is incomplete. Requires all items the family believes they

have just sent in.• 1/18 – Call to CAO to clarify. No response.• 1/22 – Call to CAO to check what precisely is needed and by when. Caseworker says just received

package of info from family and AAA. Will review tomorrow and call to report what was missing, ifanything, and to answer questions.

• 1/23 – Call to CAO. Caseworker says hasn’t reviewed information yet. Will review and will call ifshe needs more information. The caseworker promised she “will not deny because information isincomplete,” without advising what more is needed and giving family an opportunity to submit it.

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February 2001

• 2/6 – Call to CAO. No response.• 2/7 – Call to CAO. Told case was rejected for lack of information and that notice is on its way.• 2/8 – Call to caseworker’s supervisor, who said she supported the caseworker’s decision. The

supervisor reviewed what was missing, all of which were on hand with her advocate and couldeasily have been faxed prior to rejection.

• 2/9 – Faxed all missing documents and letter to District Administrator.• 2/12 – Call to District Administrator. Told to appeal denial. Filed second and subsequent

application.• 2/14 – Appeal filed. Hearing scheduled for 3/29.

March 2001

• 3/2 – Call to CAO. Told client needs to sign application again but not resend all documents.• 3/5 – Call to CAO. Told reviewing.• 3/7 – Call to CAO. Told reviewing.• 3/8 – Call from CAO to client. Client told needs all documentation resent again.• 3/9 – Call to CAO. No response.• 3/12 – Call to CAO. No response.• 3/15 – Call from advocate. Client is over resource level.• 3/19 – Excess assets due to pay-out from AARP policy for loss of her leg.• 3/23 – Client willing to reduce assets to pay off bill for hospital bed. Call to caseworker to verify

that once verify reduction of assets to below $2,000, client will be certified for waiver.• 3/26 – Hand-deliver verification of reduction of assets.• 3/27 – Approved/Certified for Waiver.

April 2001

• 4/1 – 4/15 AAA conducting care planning visits.• 4/17 – Confirmed verification of reduction of assets.

May 2001

• 5/9 – Services began in part. (Not all shifts of HHA filled.)

July 2001

• 7/25 – All shifts of HHA filled.

Documents

HOME AND COMMUNITY-BASED SERVICES BARRIERS … · includes care and services funded by Medicare, Medicaid, or state programs. Private HCBS includes care and services funded by consumer