Disability Resource Center
ARMS STATUS REPORT 2009
LONG-TERM CARE IN KENTUCKY
Executive Summary
As our nation faces the challenges of health care reform, no issue looms larger than that of providing long-term care and support to our most vulnerable populations. In the 1980’s and early nineties, Kentucky was in the forefront of states developing innovations to meet the growing needs of frail elderly and individuals with disabilities. In recent years, Kentucky has fallen behind other states in implementing innovative practices aimed at controlling spiraling demands on the Medicaid program and reducing reliance on costly institutional care.
The current administration took office with strong pledges to move forward with initiatives to overhaul long-term care in the state. This paper, developed by Advocates for Reforming Medicaid Reform (ARMS), reports the status of progress in ten critical long-term care initiatives over the past year. These areas include:
- Money Follows the Person (MFP) Grant
- Consumer Directed Option/Self Directed Option
- Developments of Department for Aging and Independent Living (DAIL)
- Michelle P. Medicaid Waiver (for individuals with mental retardation or developmental disabilities)
- Acquired Brain Injury (ABI) Long Term Waiver
- Map 95 Process (regarding durable medical equipment and supplies)
- Streamlining Provider Requirements
- Adult Neuro-Behavioral Sciences
- Oakwood Intermediate Care Facility
- Personal Care Attendant Program/PCAP
As reflected in the report, minimal progress has been made over the last year in achieving the goals set for these important programs and most are in jeopardy of failure. States that have implemented these reforms have used taxpayer’s money more effectively to expand the numbers served, at the same time controlling growing demands on the Medicaid budget, reducing reliance on institutional services, providing quality person-centered care, protecting the dignity and independence of individuals, and providing greater support to families. It is critical for Kentucky to take steps to move forward or risk falling further behind in long-term health care our citizens.
Overview of Advocates for Reforming Medicaid Services Agenda
A STATUS REPORT:
ONE YEAR LATER
Submitted to
Governor Steve Beshear
February 2009
I. Money Follows the Person (MFP) Grant
STATUS: CRITICAL
Kentucky is not meeting the required benchmarks and is at risk of defaulting on the grant. The most critical issue is that the state has no nothing to build the required infrastructure including revising the current 1915c waivers to include more services. Therefore, on day 366, anyone who has been transitioned out of the facility is at risk of going back in due to the lack of available services.
BACKGROUND:
This $49 million,
five-year grant was awarded to Kentucky by CMS in May 2007. Per the
operational protocol, which is the legal “contract” between CMS and
Kentucky, the state is required to transition 546 people who want to live in
the community from nursing facilities and Intermediate Care Facilities (ICF)
for persons with mental retardation or developmental disabilities to
community services with this funding. To date, 8 individuals have been
transitioned into the community.
The MFP steering committee, a broad-based committee comprised of advocates
and providers from all sectors of Kentucky’s long-term care and disability
communities, was involved in the development of the grant but has since been
shut out of any meaningful involvement despite assurance to CMS that the
steering committee would take a leadership role as noted on page 46 of the
protocol. This program is woefully behind and as it is being implemented
is most likely harmful to anyone who transitions out of the community. The
state is not following the protocol as it is written. Specifically:
· Kentucky is not meeting the federally required benchmarks.
o Benchmark One: By Year Two, May 2008, the state is required to have transitioned 11 individuals from facilities. By Year Three, May 2009, that number jumps dramatically to 200. This number is followed in Year Four to 201 and Year five to additional 123.
o Benchmark Four: Kentucky will increase self-directed options. In contrast, Kentucky has decreased the amount of self-directed options and has withdrawn a pilot on self-direction that many within the state have requested for several years. This was supported by the Beshear administration and committed to during their election.
o No progress has been made on Benchmark Five requiring the state to increase transportation
o Additional benchmarks pertaining to transitioning funding from facilities to the community based programs have not occurred. If anything, due to Oakwood, more money today is being poured into facilities than ever before.
· Kentucky has destroyed the organizational structure of the program as noted of page 84 of the Operational Protocol. The program has become an isolated entity in DMS and is now excluding all other departments as well as the steering committee in the decision making process.
· Most importantly, DMS has either directly decided or just doesn’t understand, that they have neglected to develop essential components of the infrastructure in order to fully implement MFP. At this time there are no quality control mechanisms in place, or reporting requirements.
However, most concerning is that the state has decided to not alter the current waivers, as required by the protocol in order to address the needs of the MFP population on day 366 of the program. This essentially condemns anyone who has been transitioned from the facility to go back to the facility on day 366 because there will not be enough services available to maintain them in the community.
II. Consumer Directed Option/Self Directed Option
STATUS: CRITICAL
After numerous promises that the state was working with CMS on the SDO pilot, DMS has finally confessed that they have not been pursuing the option. They have reneged on the promise to pursue the pilot and they have continued to place obstacles in place to fully implement Consumer Directed Options. CDO policy and budgets are being set by untrained, administrative staff in DMS rather than by experts in the field. Once again the other departments have been squeezed out of the decision making process and are left with attempting to implement poor policy. At one time there was a steering committee comprised of experts from the field, advocates and other department staff but the committee has been discontinued due to the fact that DMS did not want to provide information or take any advice or feedback from the committee.
BACKGROUND:
In addition to the Consumer Directed Option (CDO) program within the five waivers Kentucky was working to develop the next step in self-determination. DMS has repeatedly stated they were developing a state plan amendment to provide services for individuals with disabilities through a pilot self-directed option (SDO). The pilot originally developed in the KyHealth Choices waiver planned to serve 200 individuals in various parts of the state who are eligible for Home and Community Based (HCB), ABI or Supports for Community Living (SCL) waiver services. Through SDO, these individuals would create a highly personal budget and services plan specifically designed to meet their unique health needs. DMS has submitted two drafts to CMS for review and comment.
III. Development of DAIL – Department for Aging and Independent Living
STATUS: DISMAL
While
DAIL continues to operate its programs in an exemplary matter, the majority
of the programs ARMS requested to be included are still outside the scope of
DAIL. Furthermore, the most important component of the ARMS model is to
allow one Department to bring together all of the key players to set policy
for long term care populations. This key component, while promised support
from this administration, has not been met and has actually deteriorated
significantly. Inclusion, collaboration and transparency have become
virtually non-existent across the Cabinet as each department works in
isolation from each other as well as from the Secretary’s and Governor’s
office. Despite over a year into this administration and taking into
account the huge challenges the state faces there still doesn’t appear to be
a plan or vision in CHFS. It would seem critical that now more than ever,
streamlining collaboration and partnerships would be the expectation rather
than the exception. If advocates are brought to the table it is to receive
a report rather than be a part of the planning, decision making and
implementation process. DMS continues to operate in a vacuum and excludes
not only DAIL but other key partners as well. We have made no progress in
wielding away the programmatic power from DMS and allowing the departments
with more expertise to set policy and direction, Therefore, as this document
demonstrates, there has been little progress made on the majority of the
major initiatives. We intend to continue to demand the creation of a viable
Department focused on serving individuals cradle to grave (First Steps to
Hospice.
BACKGROUND:
In November 2006, the Administration announced the renaming of the Division of Aging to the Department of Aging and Independent Living. We have had several meetings with the Secretary of the Cabinet for Health Services to discuss our proposal for the Department design (See Department of Aging and Independent Living of Kentucky presentation ORGIZATIONAL CHART dated March 16th 2007).
IV. Michelle P. Waiver
STATUS: DISMAL
There are significant delays and implementation issues. The waiver is serving 400 individuals despite promises to serve 3,000 in year one. DMS provides poor communication on the status of the waiver, how to access services and on mechanisms to address time and service delays. There is a significant lack of coordination with other departments, providers and advocates.
BACKGROUND:
The Centers for Medicare and Medicaid Services (CMS) approved a new Medicaid waiver that was intended to increase Kentucky’s ability to provide community services to individuals with mental retardation and developmental disabilities through KyHealth Choices.
The 1915C waiver, approved August 29, 2007, was developed to provide non-residential supports and services needed by individuals with mental retardation or developmental disabilities to enable them to live safely in the community.
The new waiver was delayed repeatedly and did not become operational until August of 2008. It was supposed to provide services for up to 10,000 people in the first year. In each of the following two years the capacity to serve 2,000 more people was planned to be added.
However, six months into implementation, the waiver is serving only a few hundred people, a far cry from the anticipated year one goal of 10,000. In addition, there are numerous issues and delays in accessing the waiver. One significant issue is that DMS is again operating in a vacuum and have excluded experts from the field as well as the Departments for Mental Health, Developmental Disabilities and Substance Abuse and the Department for Aging and Independent Living from assisting in implementation and addressing issues. In fact, all attempts to assist DMS in anyway are met with negativity and hostility.
V. Acquired Brain Injury (ABI) Long Term Waiver
STATUS: DISMAL
There
have been significant delays and implementation issues. The waiver is
serving very few clients and there continues to be poor communication on the
status of the waiver. There is a complete lack of coordination or
collaboration by DMS with other departments, providers and advocates. The
waivers would be better served in the Department for Aging and independent
Living where the current Brain Injury Trust Fund has been located.
BACKGROUND:
DMS submitted a new waiver application to CMS on October 3, 2007 and the waiver began November 2008. The ABI Long Term Care Waiver is designed to provide long-term supports for up to 200 individuals with brain injuries once they have worked through the intensive rehabilitation phase. Implementation of this waiver has also been very slow. At this time 50 slots have been allocated with 10 individuals have been accepted into the waiver.
Issues include: The hard limits set on nursing supports; the limited residential slots which are divided in categories and independent case management. It is too early to access the full extent of success since the first individuals only began service the end of 2008
VI. Map 95 Process
STATUS: NONE
Despite evidence that this process would save DMS funds and the fact that ARMS has brought this to the attention of the Cabinet upon every meeting, nothing has happened with this proposal.
BACKGROUND:
Presently, for consumers in Medicaid who need durable medical equipment and supplies they complete a MAP 95 process. A proposal was submitted to the Secretary of the Cabinet for Health Services that would create a priority ranking of items. Priority Group A would include basic necessity items such as incontinence supplies, nutritional supplies and respiratory supplies which would be purchased through a pharmacy with a Medicaid card. This initiative will allow consumers to be able to purchase on-going needed supplies. NOTE: Work group met with DMS in December 2007, to develop a plan for prior authorizing good and services.
VII. Streamlining Provider Requirements
STATUS: CRITICAL
Despite evidence that streamlining provider requirements and developing standard definitions for services would save DMS significant funding and increase the number of badly needed providers, DMS continues to ignore the importance this proposal would have on their programs. ARMS has discussed this proposal with the Cabinet at every meeting since before this administration began and while the Cabinet voices support they continue to operate contrary to the concept. For example, despite DMS “approval” of the proposal, the last two waivers written by the Cabinet contain different provider requirements and service definitions for the same services than the previously written waivers. The Cabinet continues to provide lip service to this concept and ARMS has been told “they are working on it” for over 18 months. However, the evidence shows the Cabinet is once again ignoring expertise from providers and advocates on ways to operate more efficiently.
BACKGROUND:
This initiative was started in attempt to broaden the current provider base and to recruit new providers. Our current community-based infrastructure can barely support present consumers. With the expansion of services – including MFP and Michele P, we have been working with the Cabinet for Health and Family Services for several years to make recommendations to create one set of provider requirements for all waivers. Work group recommendations were submitted to Commissioner of DMS and approved in December 2007. However, as of this time the DMS has made no effort to implement any of the recommendations.
VIII. ADULT NEURO-BEHAVIORAL SCIENCES
STATUS: CRITICAL
While
neuro-behavioral units are supposed to be a component of the new Eastern
State Hospital, no progress has been made at this time to develop the model
or concept for the units. However, we are faced with an ever-increasing need
for the units. This need can not be delayed for several years while we are
waiting for a proposed hospital to be built.
BACKGROUND:
Kentucky is in the process of developing an in-state adult neuro-behavioral program that will be person-centered and able to adapt based on the needs of the individuals being served and their families. This ideal model will be an intense treatment setting (which can be used for crisis stabilization and respite) with rehab and nursing services available. Up to twelve persons with intense rehab and/or behavioral needs would be served per residential setting.
IX. Oakwood
STATUS: CRITICAL
Almost six million dollars per month of state general funds are being sunk into Oakwood, by all accounts a failing, archaic institution, to serve fewer than 200 people. Yet, the state is slashing budgets on programs that serve tens of thousands of our vulnerable elderly and disabled citizens, foster children, grandparents and aging caregivers. The Oakwood drain is essentially bleeding the states funds and destroying the infrastructure for our more successful community based services. The state has no pliable plan in place to address Oakwood but instead rolls out the same politically correct statements month after month and year after year.
BACKGROUND:
The Cabinet presented in June 2008 a plan for re-certification of Oakwood. CMS surveyors did in fact survey Oakwood but only three of the cottages passed initial survey and the state is still awaiting an outcome of final results. In the meantime, Oakwood is costing the state 5.5 million dollars per month in state general funds for approximately 200 people.
There are numerous community providers statewide who are willing to take the remaining clients at Oakwood even though we all acknowledge they are the more intensive both behaviorally or medically. However, they have told the Cabinet in order to take them it could cost more than the $125,000 enhanced fee currently offered. On numerous occasions the providers have completed studies on actual costs which still amount to far less than the daily rate at Oakwood. They have provided those numbers and options to Medicaid and the Cabinet several times but there is never a response. In short, many professionals, consultants and advocates have provided options to the Oakwood situation and yet the Cabinet seems unable or unwilling to stop this enormous fiscal drain by this ineffective facility.
XI. Personal Care Attendant Program/PCAP
STATUS: CRITICAL
The Kentucky Personal Care Attendant Program (PCAP) is funded by general fund dollars and currently provides services to over 400 individuals with disabilities and older adults in the Commonwealth. To be eligible for the program individuals must be 18 years old and have the functional loss of at least two limbs. The program began in 1985 and was one of the first of its kind in the country. The funds go directly to the older adult or person with disability on the program who are the employer of record paying all local, state and federal employer taxes. They hire their own attendant to work for them, to do their care, when they need it. The program is under the administration of the Department of Aging and Independent Living (DAIL) and contracted through the Area Development Agencies, who contract with providers in the local areas. Waiting lists remain long and DAIL while attempting to implement CDO, and manage PCAP have been under constant attack from administrative and programmatic level DMS staff over issues that could be handled swiftly and more effective. DMS needs to be the checkbook for Medicaid services and let go of the programmatic issues that they constantly insist on wrestling with other state agencies that are more knowledgeable in their respective areas (DAIL, DMH/MR). CDO needs to be evaluated and reviewed for the most effective protocols for continued operation. From those revised protocols, individuals who receive PCAP, and any other state programs which receive general funds from the Commonwealth should be transitioned into CDO or hopefully SDO to provide the services for those who have waited too long on waiting lists for services.
BACKGROUND:
PCAP has a long waiting list, and with the rising minimum wage, and the fact that the individual on the program is responsible for paying all the employer taxes out of pocket, for some it is becoming difficult to continue to secure the service of an attendant they desperately need. Unlike Hart Supported Living that is also a state funded program by general fund dollars and provides attendant care, the taxes are included in their allocation, where in PCAP they are not. Implementation of CDO has not been affective to transition those who are currently eligible for services from PCAP to CDO. When CDO was presented the state lacked the capacity of a systematic infrastructure which provided for adequate training and establishment of proper protocols for everyone involved including consumers needing service, agencies providing services, and the network of support agencies to assure a successful transition and continued services for those who are in the most need and face nursing home or institutional placement
This document is respectfully submitted to Governor Steve Beshear on behalf of the various agencies and advocacy groups of the ARMS network.
Advocates for Reforming Medicaid Services – Whitepaper Report Q & A’s
Q: How many people are affected by your issues?
A: There were an estimated 546,014 Kentuckians aged 65 and older, and there were 824,251 state residents with a disability, in 2007. (Source: U.S. Census Bureau, 2007 American Community Survey Estimates). While not all are receiving Medicaid benefits, many are or will due to their medical condition or economic status. Also, 254,282 persons with disabilities are older Kentuckians.
Q: How many people are on Medicaid?
A: Currently, over 750,000 individuals, with, according to statements by officials of the Cabinet for Health and Family Services, approximately 3,000 additional persons being covered each month.
Q: How much does Kentucky spend on Medicaid?
A: The State Fiscal Year 2009 budget allocates $5,200,501,900 for Medicaid. Of that $1,319,141,200 is from state general funds, with the remainder coming from the federal government and other restricted sources. For SFY 2010 the state budget increases to $5,464,877,800, with $1,319,141,200 of that being state general funds.
Q: How does Kentucky Medicaid spend its funds for older Kentuckians and persons with disabilities?
A: According to the federal Centers for Medicare and Medicaid Services (CMS), in Fiscal Year 2007, Kentucky spent $909,083,774 for institutional long-term care services, and only $393,461,040 for home and community services. That is, nearly 70% of the state’s Medicaid long-term care funds went to nursing home and institutions for persons with intellectual disabilities, while only 30% was used to help support persons in their own homes. When looking at the data for only older persons and those with physical disabilities, Kentucky’s spending is more startling – over 81% of the $935,940,340 was spent on institutional care while less than 19% was spent for in-home services and supports.
Q: How does Kentucky rank among all states in how it spends its Medicaid long-term care funds?
A: Kentucky ranks 42nd among the states and the District of Columbia in how it spends its Medicaid dollars to support people in their homes and local communities. There are 11 states that have rebalanced their spending patterns so that over half of their Medicaid funds now go to for services in individual’s homes and local communities. An additional 30 states spend a higher percentage of their public funds than Kentucky does on home and community-based programs.
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