REFORMING LONG TERM CARE SERVICES IN NEW YORK STATE CENTER FOR DISABILITY RIGHTS POSITION PAPER

NOVEMBER 5 2008, VOL. 4

The traditional model of agency controlled long term care services is outmoded, expensive, and paternalistic. Consumers need to be empowered to control what services they get, when and by whom. This kind of empowerment of the consumer will lead to better health outcomes and cost savings.

Previous volumes of Reforming Long Term Care Services in New York State established the historical policy framework that has made the long term care system institutionally biased and has resulted in excessive costs to NYS and lower satisfaction among consumers. CDR believes that consumer directed services should be the focus of long term care reform. There are several programs predicated on the consumer directed, community-based model. Two programs that CDR would like to highlight are the Consumer Directed Personal Assistance Program (CDPAP), currently available in NYS, and Cash and Counseling, which should be offered by the state.

CONSUMER DIRECTED V. AGENCY DIRECTED
It is important to note that not all community-based services are alike. A person receiving services at home can either do so within the context of a traditional agency (e.g. CHHA) or in a consumer directed program (CDPAP). It is not enough for NYS to promote home and community-based services (HCBS); the state must also focus on consumer directed initiatives. Studies have proven that consumer directed services result in higher satisfaction among consumers. According to a report produced by the National Council on Disabilities:

“Studies of consumer direction indicate positive outcomes in terms of consumer satisfaction, quality of life, and perceived empowerment. There is no evidence that consumer direction compromises safety—in fact, the opposite appears to be true. Individuals who have participated in consumer directed systems express strong preference for consumer direction and satisfaction with their care”
(Consumer directed health care: how well does it work? National Council on Disability, Oct. 2004).

A recent study of Arkansas’ program found that 64 percent of individuals in a consumer directed program indicated “very satisfied” with their HCBS, compared to only 47.4 percent in an agency directed HCBS program. In addition, 58.8 percent of individuals participating in consumer directed services indicated that they “always” or “usually” have enough personal care service hours compared to 46.2 percent of individuals in agency-directed programs. Conversely, only 20.6 percent of individuals in a consumer directed program claimed they “never” have enough hours compared to 38.7 percent in an agency directed program. (Comparing outcomes of persons choosing consumer-directed or agency-directed personal assistance services. Journal of Rehabilitation, Kim, April-June 2006.) It can be reasonably inferred that there is a correlation between satisfaction and hours received. Individuals following a consumer directed model appear to be more able to fill gaps in service hours (due to no-shows and conflicts) than agencies are able to do in a traditional program. Agency directed programs are perhaps confined by policies that neither motivate nor permit them to be “creative” with service delivery, while consumer directed programs allow consumers the flexibility to meet their needs through self-designed back up plans and strategies. Logically, consumers are more motivated to ensure that their services are covered than agencies are.

For every consumer who shifts from a traditional agency to a consumer directed program, NYS could save:

CHHA rate*: $ 29.25
Consumer Directed rate*: $ 19.75
Difference: $ 9.50
Medicaid state share: 50%
Savings: $ 4.75/hour

There are currently 387,000 individuals served through a home care agency. If only 10% across the entire state, requiring a conservative average of 40 hours per week, transitioned from a traditional agency to a consumer directed program, the state would save $382,356,000 … that is almost a four hundred million dollars in savings to the state every year for advising only 10% of people to switch to a CDPAP, which they most likely would prefer.

*NYSDOH recorded rates as of January 1, 2008

CONSUMER DIRECTED PERSONAL ASSISTANCE PROGRAM
CDPAP evolved out of the original Patient Managed Home Care Program that was created from the 1992 Chapter 795 Social Service Law § 365-f. CDPAP is a Medicaid-funded program that allows consumers to actively direct services received in their homes. This program embodies the consumer directed approach by empowering consumers (or a self-directing other, such as a family member) with the responsibility for managing their home care services worker in an employer-employee relationship. The CDPAP agency acts as the fiscal intermediary charged with financial responsibilities such as billing and record keeping, while the consumer is responsible for managing their employees through hiring, training, scheduling, etc.

Why CDPAP?

• Saves NYS money
• Supports Most Integrated Setting
• Provides employment opportunities for paraprofessional workers\
• Allows customized plan of care
• Puts consumers in control!

CASH AND COUNSELING
Cash and Counseling is a fundamentally consumer directed program whereby consumers receive certain flexible funds that may be used for a variety of services, chosen by the consumer, to enable the consumer to live independently. The funds can be used for personal care workers, over the counter medication, supplies, and home modifications, to name a few. A report conducted by the Robert Wood Johnson Foundation concluded that the:

“Cash and Counseling model of self-directed personal assistance services significantly improves the lives of people of all ages who need such services, as well as the lives of their unpaid primary caregivers. It also increases access to personal assistance services, helps consumers maintain their health status, and it does not increase fraud and abuse. Furthermore, it does not cost more than traditional agency services, if states design and monitor their programs carefully”
(Choosing Independence: An Overview of the Cash & Counseling Model of Self-Directed Personal Assistance Services, RWJF, 2007).

In a study by Mathematica Policy Research, the Cash and Counseling programs in New Jersey, Arkansas, and Florida were analyzed using a control group, which followed the traditional agency program, versus a treatment group, which received a monthly allowance that could be used to hire workers and purchase relevant goods and services. According to the analysis:

“…relative to control group members, treatment group members were much less likely to have remaining unmet needs for help with daily living activities, help around the house, and routine health care, and they reported much higher satisfaction with the way that paid caregivers helped with those services. These differences reflect the treatment groups’ higher reported rates of paid caregivers’ arriving on time and completing their work, and lower rates of being neglected, treated disrespectfully, or having things stolen from them”
(Cash & Counseling: Improving the Lives of Medicaid Beneficiaries Who Need Personal Care or Home and Community-Based Services; Final Report, Mathematica Policy Research, August 2007).

NYS has the green light to implement Cash and Counseling
The Cash and Counseling program has proved successful because the program can be customized to fit the needs of the state and the populations they serve. As of January 2007, federally approved waivers are no longer required for states to offer flexible budgets to eligible Medicaid consumers and as of October 2008, the federal regulations were released in order to assist states in implementation. (See Cash and Counseling regulations in the Federal Register Volume 73, Number 193, October 3, 2008.)

Why Cash and Counseling?

• Provides alternatives to consumers
• Improves quality of life
• Empowers consumers to decide how to spend allocated funds
• Reduces the need for agency intervention

CORRECTING MISCONCEPTIONS ABOUT CONSUMER DIRECTED SERVICES
There are some general reservations regarding consumer directed programs because there has been little education on what consumer directed programs entail. The misconception is that people are expected to manage their services without any supports. This misconception has led to concerns from medical professionals regarding training; concerns from state agencies regarding oversight and the potential for fraud; and concerns from consumers that they will not be able to handle the responsibilities. These misconceptions have contributed to the continued bias toward agency directed services.

Training. In New York, the CDPAP agency works with consumers so the consumers can train the attendants. This allows for more tailored service delivery. For example, a consumer can instruct the attendant specifically on how to assist in bathing according to the needs and preferences of the consumer, rather than according to the standard operating procedure espoused by the agency. The expert on services and care coordination is the consumer.

Oversight. The CDPAP agency provides oversight in the consumer directed program. The agency conducts a variety of measures to prevent Medicaid fraud, waste and abuse including, but not limited to: (1) Oversees and processes timesheets to assure validity; (2) Crosses out any unused lines on the timesheet to prevent any unauthorized additions, conducts a thorough review to assure that all entries are correct, and signs a disclaimer verifying accuracy; (3) Requires valid and authentic signatures on timesheets by maintaining an authorized signature verification book; and (4) Provides Prior Approval Usage Reports to monitor how many hours consumer could have used, how many hours were actually used, and how many are left in the current prior approval period. In addition, by being available as a point of contact and consultation for consumers, the CDPAP agency serves as a front line resource for quality assurance.

Too difficult for a consumer. It is a blatant fallacy that high-needs people with disabilities cannot manage their own care. In the context of those who depend on medical technology, “More and more people with significant disabilities, including ventilator users, are living longer, healthier, independent lives in the community” (Maximizing your Support and Independence Through Attendant Care, Ventilator-Assisted Living, Hershey, Summer 2006, Vol. 20 No. 2). With respect to people with intellectual disabilities, CDPAP allows a “self-directing other” to assist the consumer in managing their services. Again, the CDPAP agency works closely with consumers to ensure that consumers are able to manage their care regardless of their disability types.

POLICY RECOMMENDATIONS
The most appropriate vehicle to introduce Cash and Counseling into NYS is through the Nursing Facility Transition and Diversion (NFTD) waiver. By offering it as part of the waiver, Cash and Counseling becomes an option for consumers to voluntarily select. It is both aggregately capped and regionally coordinated, which benefits both the state and consumers.

Consumer directed programs are less costly to the State and address the desire of consumers to remain in the community and manage their services. Yet, NYS continues to promote institutional care and agency directed programs over better plans. NYS must work with service coordinators, hospital social workers, county staff, and the like, to ensure that these professionals are presenting consumer directed services as the first option in consumer care and service plans.

CENTER FOR DISABILITY RIGHTS – 99 WASHINGTON AVENUE, SUITE 806B -ALBANY, NY 12210 V/TDD (518) 320-7100 – FAX (518) 320-7122 – WWW.ROCHESTERCDR.ORG