The Supported Living Network: Advocating for Person-Centered Support and System Change Prepared by the Supported Living Network January 22, 2016 Contact:
Jacquelyn and Bruce Blaney
CMS has provided compelling value guidelines for human service systems:
• Person-Centered Values and Approaches.
• Rebalancing Service Systems to shift from institutional to individualized community support, including the elimination of disability segregation.
• Implementing fiscal structures which support person-centered outcomes.
The Supported Living Network has embraced and advocated for achieving these outcomes for more than fifteen years. The Network has been instrumental in facilitating quality in-home support to our most vulnerable citizens. We have provided best practice training and technical assistance to system actors from Spring Hill to Violet Louisiana. We have been instrumental in fighting for positive change on the individual and system levels. Our members have helped and continue to help people live, work and have meaningful relationships in their communities with person-centered supports.
Our governor’s description of the Jindal years as “failed leadership” applies equally to DHH: DHH for the past eight years has repudiated the above progressive values and promoted harmful and regressive practices.
1) Repudiating person-centered values and approaches. DHH replaced person-centered planning with the Resource Allocation Model in 2009, a value empty rationing process for cutting services and promoting disability segregation.
2) The great Un-Balancing: The Nursing home lobby and DHH policy
a. In 2009, DHH officials in collaboration with the nursing home lobby used the Senate Streamlining Government Commission to launch an attack on in-home support as bankrupting Medicaid and as a pervasively fraudulent industry.( See the Streamlining Government Senate Proceedings).
This ideological attack was followed by:
• Cuts in Services: the Resource Allocation Model cut services to people with disabilities and older adults by as much as 40%, despite 3000 appeals.
• Punitive Audits—Postelwaite and Netterville, carried out the initial punitive audit in 2010; DHH cancelled the contract within a year because of opposition. In 2010 the DHH Office of Program Integrity initiated punitive audits.
• Cuts in In-Home Support Provider Rates: In-home support rates have been cut by 23% since 2011.
• Nursing home rates have increased by 37% in the same period.
b. No cuts to or criticism of nursing homes
c. Protecting the nursing home industry—DHH pays for empty beds; the Legislature supports constitutional nursing home rate protections in 2013.
d. Legislative Auditor’s Report on LA Nursing Homes, June 2014: In the face of this detailed disclosure of harmful and dangerous conditions in LA nursing homes, DHH is mute and does not act.
e. In 2015, DHH terminates a two-year managed care project in long term services because of nursing home opposition.
f. The past eight years have seen a devastating shift in resources from in-home support to nursing homes, creating a 50,000 person wait list, despite the fact that LA nursing homes sector have a 25% vacancy rate. The in-home support industry is on the edge of bankruptcy.
g. DHH long term support policy has been about obedience to the nursing home lobby, not values-based leadership.
3) DHH Opposition to Medicaid Expansion. The Institute on Medicine reported that 670 Louisiana citizens die prematurely every year because they lack health coverage. This DHH policy decision was lethal.
4) In the past eight years support coordination has become dysfunctional and harmful. Support coordination focuses on reducing support, promoting segregated options and generating largely irrelevant paperwork.
5) DHH has undermined a living wage for direct support staff: In 2007 the Supported Living Network and the Alliance for Direct Support Professionals launched a campaign for a direct support wage increase and won a $2.00/hour increase. DHH rate cuts in 2009-10 took back the increase, making LA’s direct support workforce once again the lowest paid in the nation. Creating a Person-Centered System: Recommendations
1) Ensure that DHH leadership at all levels is committed to best practice values and approaches.
2) Ensure and support an emergency rate increase that will stabilize the in-home support industry.
3) Five-Year Rebalancing Action Plan to address the 50,000 person wait list for in-home support.
4) Ensure and support a rate methodology that provides reasonable reimbursement, based on state, federal and best practice requirements.
5) Partner with support agencies and other stakeholders to address workforce needs, including a living wage and recruitment and retention of frontline and management staff. Invest substantially in provider staff training and capacity building.
6) Ensure that person-centered planning is available to all persons engaging our system.
7) Ensure and support accountability to provide person-centered planning and capacity building in best practice approaches.
8) Develop a regulatory approach that has clear and consistent standards, that holds wrong-doers accountable and supports quality improvement at all levels. 9) Recognize and financially support the planning, coordination and community resource development functions carried out by support provider staff.
10) Prioritize implementation of the CMS Settings Rule with a focus on ending facility-based segregation and the requirement for Person-Centered Planning in all service settings.
Supported Living Network
Fact Sheet on Dept of Health and Hospitals (DHH)
Human Service Cuts
A Reversal of Direction
From Individual Support to
Forced Group Living and Day-Time Institutions
The Supported Living Network: Represents more than 300 providers of individual support to people living in their own homes and apartments who are also supported in jobs and community membership. Many of these agencies are owned by African American women.
Louisiana is # 1 in the Provision of Best Practice Support
In the past ten years, a coalition of families, people with disabilities, direct support workers and providers of individual supports have moved almost half the state disabilities budget from funding disability segregated institutions to support to individuals in our communities. With 300 agencies providing individual, and as much as 24 hour support, to people in their own homes, Louisiana is # 1 in the nation in offering individual support. MS, GA, SC, NC, AL, TX have no agencies which offer 24 hour individual support; these states rely exclusively on small and large institutions.
In addition, developmental disabilities providers of individual support have become, in the past five years, the major providers of in-home supports to older adults. These providers represent a shift in values and practice from the custodial, medical models of home care to individualized support to older adults in enjoying lives of relationship and contribution in our communities. Louisiana is #1 in the nation in implementing this paradigm shift on behalf of our citizens who are living long lives.
The Reversal of Direction: The Resource Allocation Model (RAM)
For the past year, DHH has conducted a propaganda campaign aimed at discrediting individual supports as too costly and out of control. Recently DHH rolled out the RAM which seeks to implement massive and deep cuts to individual supports for people with disabilities and older adults. People are already being forced into group living and day time institutions in order to receive 24 hour support. In addition to DHH, the nursing home, small institution (group home) and day time institution (workshop) lobbies are the major advocates for the RAM. These special interests are quite simply trying to eliminate individual supports and turn back the clock to the 1980’s, when they were the only game in town. These lobbies represent white, male-owned, large and wealthy agencies which have spent millions influencing politicians.
The RAM is also being used to devastate the few in-home supports available to older adults, cutting the meager hours of support by 10%, with more cuts on the way. For example, the nursing home lobby has kept more than 75% of the state budget on aging services allocated to nursing homes, while 90% of the public is emphatic about wanting in-home individual supports. These cuts will force some older adults into nursing homes as the only option for support and massively under-serve others who manage to remain in our communities. As Robert Butler once observed of the nursing home industry, “houses of death are a lively business.”
Very significantly, the group home, workshop and nursing home industries are completely exempted from the RAM cuts.
Fight for a Living Wage
We are fighting for a living wage for direct support workers, who are the lowest paid human service workers in the nation. The state has created a dual labor market as the base for exploitation: Publically employed direct support workers make $12 an hour with a full benefit package. Workers with identical job descriptions who work for private providers, who are paid by the state through contractual arrangements are paid less than $7 an hour with no benefits. The state sets the rates which enforce this super-exploitation. Such exploitation is at the core racist and sexist: 95% of these direct support workers are African American women.
A public forum on April 16 co-sponsored by coalition members.
A petition campaign to the Governor.
A feature article in several cities signed by coalition members.
Legislative resolution opposing the cuts, calling for system-wide reform and an expansion of individual support to people with disabilities and older adults.
A meeting with potential legislative allies.
Recruiting additional organizations such as AARP, YWCA
Utilizing the websites of organizations such as the Louisiana Movement.
Contact Jackie and Bruce Blaney at 924-7998 or
Guest commentary: Nursing home lobby stifles change
by Bruce C. Blaney June 7, 2014 Baton Rouge Advocate
Senior citizens have a vision for the future: Virtually every long-living adult wishes to live in their own home, and many say they would rather die than go to a nursing home. The wait list for in-home support is at 40,000 and growing; the nursing home vacancy rate is at 25 percent and growing. Ignoring the clear choice of seniors, the Department of Health and Hospitals continues to spend twice as much on nursing homes as on in-home support for seniors.
This injustice goes way beyond what statistics can capture. Two recent reports, one by the legislative auditor and one by AARP, detail a nightmare for the 25,000 seniors in nursing homes. The legislative auditor’s investigation disclosed life-threatening and spirit-crushing conditions in numerous Louisiana nursing homes: pressure sores, physical restraints, psycho-active medication used as restraint, understaffing and pervasive clinical depression.
Please take a moment and imagine being in such a “home.” Pressure bed sores are caused by prolonged neglect. Physical and chemical restraint, the restraining “geri-chair,” tying people to beds and drugging people, are all ways that the industry substitutes social control for staff support. Ever since Robert Butler, the first director of the National Institute on Aging, published his nursing home investigation in 1968, titled “Houses of Death are a Lively Business,” nursing homes have been infamous for substituting physical and chemical control for staff support. Quite simply, it’s where the money is.
One does not have to wonder why people in nursing homes withdraw and are deeply depressed. What would you and I do?
In the past three weeks, I have called DHH, members of the House and Senate Health and Welfare committees, the chairs of both Health and Welfare committees and many other representatives and senators. In my calls and emails, I requested that the Joint Health and Welfare Committee hold hearings on the reports to investigate the life-threatening conditions affecting 25,000 Louisiana seniors. I also requested that DHH specifically respond with a follow-up investigation and reform plan.
The response has been silence.
Even the free market, so often extolled by DHH officials and Louisiana legislators, is, on its own, clearly moving to phase out nursing institutions. Market demand has been continually declining for nursing homes as reflected in a 25 percent vacancy rate; market demand for in-home support is at an all-time high, with 40,000 people willing to wait as long as 10 years for in-home support.
But this is no free market. The nursing institution industry contributes more money to legislators and the governor than the oil and gas industry. Nursing home special interests have bought “protection” on a massive scale: Nursing home rates have enjoyed a 38 percent increase in the past four years, while in-home support rates have been cut by 23 percent during the same period. Nursing homes are even paid for empty beds. With legislative support and DHH acquiescence, nursing homes are close to passing a constitutional amendment, which will make nursing home budget cuts illegal.
The Legislature does not uphold the sacred free market when political contributions cascade like a waterfall. And DHH remains on bended knee before nursing home political power.
The legislative auditor and AARP have exposed the pretense of Louisiana nursing homes as a source of quality medical and social support and revealed the true nature of what the political class is protecting — greed-motivated practices that inflict suffering and despair on thousands.
In the face of these alarming revelations, DHH and the Legislature have chosen silence — in effect, collaboration with a life-threatening industry.
Clearly then, it is up to us to protect seniors and advocate for deep reform. Pressure your legislators and DHH to shift resources from nursing institutions to what our citizens want and what best practice prescribes: a system of quality, person-centered in-home support.
The life you support may be your own.
Bruce C. Blaney coordinates the LA Supported Living Network, an association of in-home support agencies. His wife oversees an in-home support agency.
Support Coordination In LA: A Failed and Harmful
Illusions of Effectiveness:
The Network’s efforts to push for the reform of support coordination, summarized in the Net- work’s People’s Plan for System Reform, have repeatedly encountered OCDD and DHH illu- sions that support coordination is currently or potentially able to carry out effective planning, coordination and quality assurance. Such illusions lead state officials to tinker, when deep change is required, or to misdirect reform, most recently toward training support coordinators as person-centered planners. We discuss these illusions below and offer our understanding of reality and relevant reform.
Illusion #1: Support Coordinators Do Now or Will Some Day Do Effective Person-Centered Planning Defining support coordinators as person-centered planners fails to recognize the reality of their role: Support Coordinators, since the advent of Medicaid funding, are in the business of assuring the flow of Medicaid dollars to the state. When we strip away the rhetoric of “planning”, “linkage” and “quality assurance”, what support coordinators actually do almost all the time is get service plans filled out and submitted. The service plan (formerly called the Comprehensive Plan of Care and now the Individual Supports Plan) is in reality a claim on Medicaid dollars, and the essential role of support coordinators is to assure the flow of fed- eral funding by processing these claims. The typical “planning” meeting lasts less than an hour, during which the focus of the support coordinator is on getting the ‘plan” signed. Those forms are then sent to federal Medicaid (CMS), the largest insurance company in the world, which then pays the state. The CPOC or ISP is not a plan; it is an insurance claim.
DHH needs to acknowledge that reality and realize that such a role is not designed to and will never support an effective person-centered planning role for support coordination. Supported living providers, on the other hand, have demonstrated their capacity to develop person-centered plans and effective facilitator roles within their agencies. We urge OCDD to look at the reality of good person-centered planning within agencies and give up the illusion that support coordinators are planners.
Illusion #2: Support Coordinators Coordinate
Remarkably, supported living agencies receive no funding specifically targeted to supporting the coordinator level of the agency. Many supported living agencies, nonetheless, continue to employ as many as five mid-level coordinators, who facilitate person-centered planning and build the capacity of DSP teams. In addition, the coordinator level coordinates current sup- ports as well as finding and linking people to needed community supports, such as medical, legal, and income assistance as well as problem solving solutions to the gamut of challenges facing people supported.
Perhaps the reason DHH does not fund this key agency role is rooted in the illusion that sup- port coordinators are playing a coordinator role. Network members in Quarterly Meetings or trainings emphatically assert that support coordinators do not play the coordination role re-quired for effective support, and most play no coordinating role at all, even on the most superfi- cial level.
We urge key actors in OCDD to acknowledge the key role of mid-level agency coordinators, more importantly to fund that role and finally to give up the illusion that support coordination is now or ever could play such a role. One of the more dysfunctional aspects of this illusion is OCDD’s continuing belief that the SIL rate should be justified by the requirement that staff do weekly phone and face-to-face visits. The SIL rate doesn’t even scratch the surface of the funding burden imposed by employing mid -level coordinators. Adding insult to injury, coordinators must then waste their time doing ir- relevant weekly contacts. We urge, as a DHH work group recommended more than two years ago, that OCDD eliminate this burdensome requirement.
Illusion #3 : Support Coordination Accomplishes Effective
Unfortunately, it has become all too common for states to promise CMS that support coordina- tion will assure the health and safety of people supported. Probably most Waiver applications now include that promise, and Louisiana is no exception. The experience of Network members is that Support Coordinators do little or nothing to actually assure a person’s health or security. Medical supports, responses to abuse or neglect, emergency preparations are all accomplished by family members, the supported living agency and the person supported.
Illusion #4: Support Coordination is a Resource Gate-Keeper
Support coordination is purported to carry out a “gate-keeping” function, assuring the effective and efficient use of resources. The Network’s experience is that the only consistent pattern of gate-keeping carried out by support coordination is referral to congregate facilities for day-time support.
In addition, this function is pervasively corrupt. Fair and open referrals and so called “freedom of choice” have become an harmful illusion. In the experience of Network members throughout the state, support coordinators are manipulating that process to assure referrals to favored agencies.
Illusion #5: Support Coordination Provides Independent Oversight which assures the State that State-funded Services are being Provided Support coordination does indeed spend about a half-hour each quarter, eyeballing the person in the process of receiving supports. The issue here is not that oversight is not occurring. The issue is that such oversight does not require the existence of 100’s of support coordinators. That function could be carried out by a few employees, state or contracted, within each regional office.
The Network is Calling for Reality-Based and Deep Change:
1. Define Support Coordinators as Assurors of Funding and Give Up the Illusion that they are Person-Centered Planners, Coordinators, Quality Assurers or Gate-Keepers.
Support coordination is effective in getting support plans funded. There is clearly nothing wrong with assuring funding. What is wrong is the illusion that support coordinators are best-
positioned to develop relevant plans. Once we give up that most harmful of all the illusions dis- cussed, then we may reframe support coordination as a resource and partner with providers and families in funding plans developed by families, providers and the people supported. Support coordinators would then translate relevant plans into an insurance claim format, fundable by the federal Center for Medicare and Medicaid Services (CMS). Such a partnership supports a useful role for support coordination, rooted in the reality of their claims-processing function, and at the same time supports relevant family, person-supported and provider created person-centered plans.
a) Reframing the role of support coordination will greatly reduce the number of support coordi- nators required, freeing up resources to support families and providers in accomplishing effec- tive person–centered planning, coordination and quality assurance. b) OCDD is currently defining support coordination reform as building the capacity of support coordinators to carry out person-centered planning. For all the reasons discussed above, such a focus is misdirected. The Network supports training all system actors, including support coordi- nators, in person-centered values and approaches. Such training for support coordinators will potentially make them effective partners with providers and families as they learn how to fund person-centered plans. BUT:
2. DHH should acknowledge and support the coordination functions of
families and providers and give up the illusion that support coordi-
nators coordinate supports and services.
OCDD, in collaboration with providers and families, should develop rate changes within all funding streams which support the funding of the coordinator level within supported living agencies and the coordination activities of families.
3. DHH should create quality assurance functions which support the current activities of families and providers and replace the current ineffective quality assurance function of support coordination with a Regional Office quality assurance staff who work in partnership with families and providers.
4. Ethics Reform of the Referral Process
We need a complete overhaul of the current referral process and its congregate facility and favored regional provider bias. We urge OCDD to work with the Network to create a fair and open referral process..
5. Substitute the Oversight of Designated Regional Office Staff for Sup- port Coordination in Assuring that the State is Getting What It Pays For
Utilizing Regional Office staff to assure plan-driven service delivery will be both more effective and efficient in assuring provider integrity. The current reliance on support coordinators simply justifies the allocation of far more resources and personnel to this function than is required.
As John O’Brien once observed, “Sometimes the best thing we can do is to start over.” The Network Steering Committee has developed the above framework for deep change in