ICF Advocates for Choice
Choice without Boundaries
It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision. - Justice Anthony Kennedy in Olmstead
Olmstead Supreme Court Decision
"We emphasize that nothing in the Americans with Disabilities Act or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings . . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." 119 S. Ct. at 2187
"Each Disabled Person is entitled to treatment in the most integrated setting possible for that person-recognizing on a case-by-case basis, that setting may be an institution" - 119 S. Ct. at 2189
"But we recognize, as well, the States need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities and the States obligation to administer services with an even hand." - 119 S. Ct. at 2185
Freedom of Choice. The Social Security Act requires states to give individuals
who require medical assistance the choice to obtain such assistance from any “institution”or “agency” qualified to perform the services required. This “freedom of choice”provision is found in 42 USC Sec. 1396a(a)(23)
Money Follows the Person (MFP)
The HHS Money Follows Person Rebalancing Demonstration Grant (MFP) provides federal funding/financial rewards to states to favor one needed long-term care program (“community” care) over another needed long-term care program (licensed facility-based care/”institutional” care) for multiple populations with disabilities
MFP rules require states to adopt annual numerical goals of transitions of vulnerable persons from the array of institutional settings. Such a requirement flies in the face of the original purpose of the MFP legislation – to offer alternate settings for persons who have expressed an interest in transitioning from nursing homes and have the cognitive capacity to make that choice for themselves. MFP rules require states to “reduce” its use of institutional programs (a/k/a downsizing and, in some states, closing licensed facilities). Therefore, while MFP is predicated on the idea of choice, in practice, individuals are pressured to leave institutional settings. Their choice is being over-ridden by the state’s desire for federal dollars.
The MFP demonstration grant has continued to be funded under multiple bills signed into law without opportunity for hearings and without providing mortality and sentinel data for those who transfer from licensed facilities under the MFP program. Data that is provided is skewed to give the guise of success. If an individual makes it one year in a community setting, the transfer was considered a success, regardless of the actual outcome, whether it be deteriorating health or lower quality of life.
Proponents of MFP say that federal funds are needed to “rebalance” states’ long term care systems (fund more community programs than institutional programs); but states I/DD settings are already rebalanced — States spend far more money for community programs than for institutional programs, and they have for decades
According to the “gold standard” of statistically reporting in the disability care system – the “University of Minnesota in-home residential supports and services for persons with intellectual or developmental disabilities status and trends – 2016", fully 92%, that is 92 out of every 100 people receiving Medicaid dollars for residential services, receive funds for “Community” settings. If anything, the system needs to provide more support for facility-based care because the Disability landscape has changed with the increase in severe autism.
The Four Programs Created by the DD Act that Undermine ICF care
Four programs were created by the Developmental Disabilities and Bill of Rights Act of 1975 (DD Act), administered by Administration for Community Living (ACL), and which work to undermine and eliminate the Medicaid intermediate care program for persons with intellectual and developmental disabilities (ICF/I-DD). The DD Act and its programs were last reauthorized for a period of seven (7) years in 2000 (Public Law 106-402- October 30, 2000). DD Act programs include:
(1) Protection and Advocacy System for Persons with Developmental Disabilities (P&A's),
(2) State Councils on Developmental Disabilities (CDD),
(3) University Centers for Excellence in Developmental Disabilities (UCEDD) and
(4) Projects of National Significance (PNS).
Harmful Litigation by the Protection & Advocacy groups - Disability Rights Network
ICF Advocates for Choice contends that DD Act programs, which operate in every state, have insufficient oversight and accountability. The groups’ administering agency, Administration for Community Living (ACL), permits DD Act programs to engage in partisan activities. DD Act programs and ACL are biased in support of home and community-based services (HCBS) and against the option of the Medicaid intermediate care facilities (ICFs), discriminating against the profoundly disabled who need this level of care.
The DD Act Protection and Advocacy System, Disability Rights Network, refuses to represent our families or to support the choice of intermediate care facilities and sweeps vulnerable at-risk, severely disabled persons who cannot speak for themselves into lawsuits to eliminate the facilities and level of ICF care upon which they depend for health, safety and any quality of life
ACL approves such “systemic litigation” as an “intervention strategy.” It is unjust to use our own tax dollars in litigatation to eliminate the health care and residential supports our profoundly disabled loved ones require
Lobbying by DD Act Groups before Policymakers
ACL permits DD Act programs to lobby for the elimination of congregate care facilities and to denigrate licensed facilities which have served and are serving profoundly disabled persons most at risk of abuse and neglect. The agency has failed to report to Congress or to the Administration on the deaths and suffering which have followed forced removal of defenseless persons from facilities.
MFP ONLY provides one year of funding for individuals to move from an institutional setting to an HCBS setting.
$ FOUR BILLION DOLLAR PRICE TAG RESULTS IN $ ONE BILLION IN SAVINGS FOR STATES
MFP research was conducted by Mathematica Policy Research. One Mathematica representative stated during the Community Living Policy Center (CLPC) Webinar Impact of MFP webinar on July 25, 2019 that the total cost has been over $4 billion (2005-2018) but only produced $1 billion dollars in savings
The Money is not Following the Person in the Money Follows the Person program.
In 2017, the Illinois House of Representatives ordered an audit of the CILAs program at the Department of Human Services. The report was published in 2018. During the audit, they found that MFP is a “misnomer”.
DHS failed to develop a State plan to create CILAs throughout the State of Illinois. The requirements for participating in the MFP program requires that an individual living in a developmental center move to a CILA with four beds or less. During FY12- FY16 the total MFP funds granted to Illinois from CMS was $11.2 million dollars. However, the State did not create any budget for the MFP program and the funds went to benefit the State (general fund) and not to any community agency.
Congress should hold open hearings and hear public testimony from participants and/or their guardians to determine the continued feasibility of MFP in light of these concerns. ICFs should remain a choice to provide a true and full continuum of care for those that request services for their loved one with I/DD.
• $4 Billion dollars spent to save $1 billion dollars.
• Gaps in information regarding the Quality of Life Survey.
• More than half of MFP participants end up in the Emergency Room or hospitalized.
• Over 50% of the States are withdrawing or limiting their participation in MFP.
1-Evidence for the Impact of the Money Follows the Person Program
2-a Link to webinar: Community Living Policy Center Webinar Impact of MFP
2-b Link to pdf: Community Living Policy Center Webinar Impact of MFP-pdf -page 17
3-Findings from the National Evaluation of the Money Follows the Person Rebalancing Demonstration pdf- page
4-Report to the President and Congress on MFP pdf - pages 21-22
5-The Texas MFP Operational Protocol 2018 pdf- pages 59-68
6-Money Follows the Person 2015 Annual Evaluation Report- page xv
7- Mathematica's MFP Quality of Life Survey -pdf –page 1
8- Illinois House of Representatives ordered an audit of the CILAs program -pdf -pages 13-14
9-Money Follows the Person Annual Report 2015 pdf- page 33, 28
10-Joint Report: Ensuring Beneficiary Health and Safety in Group Homes
11- Money Follows the Person: State Transitions as of December 31, 201
The following Insights and opinions courtesy of Caroline Lahrmann and Atty Bill Chovlosky:
Did You Know the DD Act that Created P&A’s Also Says that ICF’s are the Gold Standard by which all Programs Shall be Measured?
"The DD Act provides that: “(4) All programs for individuals with developmental disabilities should meet standards— (A) that are designed to assure the most favorable possible outcome for those served; and (B)(i) in the case of residential programs serving individuals in need of comprehensive health-related, habilitative, assistive technology or rehabilitative services, that are at least equivalent to those standards applicable to intermediate care facilities for the mentally retarded, promulgated in regulations of the Secretary on June 3, 1988, as appropriate, taking into account the size of the institutions and the service delivery arrangements of the facilities of the programs.” (Emphasis added.)
So, the DD Act holds ICFs up as the “standard” by which residential services for people with DD are to be held! So the same act that created Protection and Advocacy agencies (“P&A’s) – which today seek to destroy ICFs – states that ICF’s are the Gold Standard."
Speaking of P&A’s, Why Don’t States Get Rid of Them?
" Really, other than getting sued for hundreds of millions of dollars, what do states get from their P&A’s? Think about it: the Feds hand states anywhere from $1-10M annually (chump change), which the states in turn hand to their P&A,s, which in turn . . . sue the state! It begs the question why don’t some states simply withdraw from this voluntary program and abolish their P&A’s? I believe it would not affect a state’s Medicaid funding one dollar otherwise. The state could and would still run all its existing programs, just without the “help” of its P&A. As someone once said to me, P&A’s put the “hell” in “helpful.” Now before some push back about all the other good some P&A’s provide – their crazy overheads aside – the point here is not to instantly kill P&A’s, but it is to understand and confirm whether a state could indeed simple withdraw from this voluntary program."