Top Legislative Issues
Consumer-Directed/Controlled Care Models
The demographics of New York have and will continue to show an aging population. As such, identifying solutions to meet the growing need for long-term health care services must remain a priority for policymakers. As the State looks for these solutions to address long-term care needs for the elderly and disabled, HCP strongly encourages the use of home and community-based services but is extremely concerned that the State may too quickly or too broadly embrace consumer-directed or consumer-controlled care models.
Consumer-directed or consumer-controlled care models are growing programs in the health care system and are appropriate for certain self-directing patients with long-term chronic illness or disability, typically disabled adults. For these patients, having consumer-directed personal assistance is a means of obtaining necessary care and exercising greater control of their care needs. But these programs are not right for everyone.
In New York State, both expenditures and utilization of the consumer-directed personal assistance program (CDPAP) has risen dramatically since it first began in 1995 (the patient managed care long term care has been an optional program since 1992). In fact, between 1999 and 2002 (which represents the most recent Medicaid data available), the number of Medicaid patients receiving care through CDPAP tripled. During the same time frame, the number of patients receiving care through the Medicaid personal care program, which often provides comparable services, actually decreased.
HCP's concerns about these programs are not without merit. The State has had mixed experience with these types of programs. New York was initially a participant in the cash and counseling program in the late 1990's and in fact ended up exiting the program due to a lack of support from counties and providers. Also, since its inception in 1995, many have raised concerns with CDPAP, including HCP. Specifically, HCP has concerns relative to the appropriate placement of patients in the program; the appropriate oversight of the program to ensure the health and safety of the worker and the client; and providing fiscal oversight both of individual patients and the overall program. In addition, HCP remains concerned that there are numerous pitfalls for patients of self-managed care that may not be realized when entering these types of programs, such as how to provide the back-up coverage of services if a worker does not show up, quits, will not work on holidays, or for other reasons is unable to work; where to file complaints; how to address household disputes if a family member is chosen as the caregiver; how to ensure the health of the worker entering the home; and how to appropriately train the workers.
Additionally, there are questions about who will be responsible for oversight and compliance activities under consumer-directed or consumer-controlled programs. Home care agencies are licensed or certified by New York State. Both licensed and certified home care agencies are under the stringent oversight of the New York State Department of Health and are held to high standards. Home care agencies comply with myriad regulatory requirements that, among other things, ensure the health and safety of patients and workers, including providing initial and ongoing worker training, health screenings, and worker immunizations. In addition, home care agencies maintain quality improvement committees, have consumer complaint processes, and are surveyed and audited for operational and fiscal compliance. Yet, neither the current CDPAP nor the proposed consumer controlled program, are subject to the same level of scrutiny or oversight and it is unclear how this will be addressed if problems should arise.
Recently it has been reported to HCP that CDPAP is often times the Program in which Medicaid patients are placed when the patient is hard-to-serve, when agencies are unable to admit a patient because of worker availability, or when there is a desire on the part of the patient or family to discharge from an institution and home care deems it unsafe to care for the client at home. These reasons for enrolling someone in consumer-directed care may place the patient at great risk. Under these types of programs, the patient (or a reliable and appropriate proxy) is responsible for the hiring, training and supervision of workers and must be prepared and possibly trained to handle these responsibilities and oversee all aspects of the delivery of their care, including back-up care. Some of these patients and/or their families are simply not prepared to handle this responsibility. This is especially true for elderly patients with varying degrees of dementia.
In addition to quality of care and patient and worker health & safety issues, New York's experience with the CDPAP reflects a picture different than that anticipated when the Program was implemented. When the CDPAP was rolled out to all counties in 1996, savings were attributed to the expansion of the program. However, this program has become one of the largest providers of Medicaid home care services in some counties and has been growing rapidly in both enrollment and expenditures in other counties.
Medicaid expenditures on CDPAP tripled between 1999 and 2002, increasing approximately 378.9% from $12.7 million in 1999 to over $60.8 million in 2002, while personal care Medicaid expenditures have risen only 9.7% from 1999-2002. In fact, analysis of the personal care program in Upstate New York (defined as all counties outside of New York City) shows that average spending per Medicaid recipient for the primary CDPAP is $18,247 while spending per recipient for the primary Medicaid personal care program is approximately $11,027. In Upstate, the primary CDPAP accounts for almost 21% of personal care expenditures while caring for only 11% of personal care patients. There are also tremendous regional disparities within the CDPAP, which may in fact reflect problems with access to care in some areas of the State.
Given that CDPAP Medicaid expenditures have been rising, it is critical that the State assess the fiscal implications for the development of additional consumer-directed/consumer-controlled programs. There also must be appropriate audit and oversight protections to ensure that these types of programs are not susceptible to fraud and abuse by participating consumers. Consumer-directed and consumer-controlled programs must have the same level of scrutiny as other Medicaid programs to ensure that patients receive the care they need and the State is reimbursing only for care that is being delivered.
In general, HCP acknowledges that there is a role for consumer-directed home care programs in New York State and even supports the availability of these programs for the appropriate patients. As New York State assesses the best way to address the growing need for long-term care services and ensure the availability of care, it is critical that the seemingly easy answer of creating new consumer-directed programs are not too quickly adopted or too broadly applied. Taking such an approach may result in unintended consequences related to quality of care and Medicaid program expenditure increases. HCP recommends evaluating the current CDPAP and determining its strengths and weaknesses, then taking steps to address the weaknesses and building on its strengths, rather than establishing new, but similar programs. While there is a role for consumer-directed/controlled care models, they can not be a substitute for the services provided by a home care agency.
