Iowa: Managed Care and Privatization of Disability Services Create a Crisis

https://www.desmoinesregister.com/videos/news/2018/01/17/disabled-iowans-struggle-managed-care/109548320/

What's the matter with Iowa? Managed care and privatization of Medicaid for the State's poor and disabled have created a crisis in the delivery of Medicaid services. The Des Moines Register features over 60 articles from 2015 to the present reporting on the rocky road to the takeover of Medicaid by private health insurance companies.

Michigan should take note. We have a modified managed care system that so far preserves services provided by public Community Mental Health agencies and (at least theoretically) ensures that all medically necessary services will be provided to people with developmental and other disabilities. The move to privatize all services under private Medicaid Health Plans (MHP) is underway, however, with the implementation of three pilot projects and one demonstration program in the state.

Here is a sampling of articles from the Des Moines Register:

The Register’s Editorial: Medicaid plan is gift for private firms, 3/22/15

The Des Moines Register foresaw problems with the idea of privatized managed care for Iowa’s poor and disabled citizens. The editorial board encouraged the public to be skeptical, especially when the state throw’s out numbers, out of context, to show how expensive Medicaid is. It turns out that in 2015, Iowa was doing pretty well in serving people with disabilities and other low income citizens and keeping costs down in comparison to other states:

“In fiscal year 2013, a Medicaid recipient in this state cost an average of $5,491 — less than the per-person cost in 29 other states and much less than people insured by private coverage. For an adult who is not a senior or disabled, Iowa spent an average of $2,000 on health care, less than that spent in 47 other states, according to research from the Kaiser Family Foundation. Health insurance for a state lawmaker costs Iowa taxpayers about $9,000 per year.”

...“Administrative costs are low because the program is largely managed by the government, which is not beholden to stockholders or obligated to pay huge CEO salaries. The cost of operating the program is currently 4 to 8 percent, according to the Iowa Department of Human Services, which oversees Medicaid. When privatized, the cost could grow to as much as 15 percent. Those are dollars not spent on actual health care.”

...“In its comments to state officials, the Iowa Hospital Association noted that managed care companies reduce costs by denying coverage for services, including emergency room visits. The association is 'deeply concerned' that the private model could reduce access to care and reimbursement rates for providers.”

Branstad touts Medicaid contracts, but few hospitals signed

by Tony Leys, tleys@dmreg.com, 11/19/15

Signs of trouble. The takeover of Medicaid by private health plans was scheduled to go into effect January 1st, 2016 [the starting date was later moved to April 1, 2016], but by November 2015, most hospitals and physicians had not signed contracts to participate in the new system.

“Gov. Terry Branstad, who is pushing to shift management of the state’s Medicaid program to private companies on Jan. 1, said Thursday that the firms have signed more than 12,000 contracts with pharmacies, doctors and other health care providers.

“But most Iowa hospitals and physicians have not signed contracts to participate in the new system, according to the Department of Human Services. The issue is important, because the managed-care companies are supposed to show they have broad networks of health care providers willing to care for the new plans' members."

…"None of the four managed-care companies reported signing more than 17 of the 118 Iowa hospitals now participating in Medicaid. One of the companies, WellCare of Iowa, said it hadn’t signed up any hospitals. Another, AmeriHealth, said it had signed up just two.”

…”Branstad contends the shift to managed-care companies will save millions of dollars for the state and federal governments while offering flexibility and coordinated care to Medicaid recipients.

“Critics fear the change to for-profit management will lead to service cuts. They say Iowa’s 560,000 Medicaid recipients are being put in the impossible position of choosing a managed-care plan next month without knowing whether their doctors, hospitals and other health care providers will be participating in any of the networks.”

Iowa Medicaid payment shortages are 'catastrophic,' private managers tell state

by Tony Leys, tleys@dmreg.com 12/21/16

By December 2016:

“The for-profit companies running Iowa’s Medicaid program have been complaining to state administrators that the controversial project is 'drastically underfunded' and that the situation has been a 'catastrophic experience,' newly released documents show.

"One managed care executive wrote that Iowa’s recent offer to give the companies an extra $127.7 million in state and federal money this budget year 'is not acceptable.' He added that without major changes, the privately run Medicaid program could be unsustainable.”

…”Gov. Terry Branstad last year ordered the shift to private Medicaid management, which took effect April 1. Branstad, a Republican, predicted the private companies could allow the state to save tens of millions of dollars by helping the program’s 600,000 poor or disabled participants stay healthy. Critics are skeptical of the savings estimates, and they say the main effect of the switch has been to tangle Medicaid recipients and care providers in red tape.”

….”During a Statehouse hearing last week, a Democratic legislator asked executives of the three companies if they planned to ask for big raises in their payments for next fiscal year. They declined to answer.

“We really just don’t discuss those things in public settings,” Cheryl Harding, who is Iowa president for AmeriHealth Caritas, told Sen. Joe Bolkcom of Iowa City.”

Nevertheless, the health care plans complained that the plans were vastly underfunded and unsustainable. 

State should hold managed care accountable 

by Michael Bugeja, Iowa View contributor, 7/29/17 

This is the editorial viewpoint from a conservative Republican: The writer refers to a teenage “victim” of Medicaid who has a severe mental illness. Medicaid is pressuring treatment facilities to shorten the length of treatment regardless of the recommendation of the professionals involved. 

“As the former director of the Greenlee School at Iowa State University, I know Gov. Terry Branstad. I usually sat next to him at the Iowa Newspaper Association convention head table. I have the utmost respect for Gov. Branstad. His service to the state of Iowa is exemplary. But he made one colossal misjudgment in privatizing services for the mentally ill and others dependent on Medicaid services and managed care. 

"As a fiscal conservative Republican, I understand why he did it and why he believed that privatization saves the state millions of dollars. It may appear so on the surface, but savings in one area often results in expenses in others, and Iowa communities are paying the price.” 

AmeriHealth's exit should curtail disabled residents' suit against Iowa, state lawyers say

by Tony Leys, tleys@dmreg.com 11/6/17

A class action lawsuit was filed in June 2017 by Disability Rights Iowa on behalf of 6 disabled Iowans, “who argue that the state’s shift to private management of Medicaid led to illegal cuts to their in-home care services. The plaintiffs say without those services, they could be forced to move into nursing homes, violating their constitutional rights.” The class action is on behalf of about 15,000 Iowans with disabilities.

Meanwhile, Amerihealth Caritas, one of the Managed Care Companies announced that it is dropping out of the state’s Medicaid program, “because of a contract dispute. The state lawyers noted in a court filing last week that AmeriHealth oversees Medicaid benefits for all six initial plaintiffs in the Disability Rights Iowa lawsuit. None have had their benefits overseen by the remaining two managed-care companies, UnitedHealthcare and Amerigroup.”


By its very design, managed-care Medicaid discriminates against severely disabled Iowans

by Bill Dodds, Iowa View contributor, 1/26/18

"By its very design, managed-care Medicaid discriminates against disabled Iowans who require costly, long-term treatments simply to live in their communities. It’s the only way today’s managed-care organizations (MCOs) can deliver on their promise to slow the growth of Medicaid spending and generate profit for shareholders.

"Iowa, like many states, has sought to gain control over the increasing costs of its Medicaid program by doing away with a state-run system in favor of managed care. This has resulted in state contracts with multiple managed-care organizations in an attempt to incent these companies to compete in Iowa for Medicaid members by offering services that best meet their needs while simultaneously reducing costs.

"This might sound good in concept but is difficult to achieve in reality, especially for recipients who have severe mental illness and disabilities. At Optimae, we have seen this play out daily in the lives of the more than 5,300 Iowans we serve."

…"It is virtually impossible for an MCO [Managed Care Organization] to determine which of the millions of units of services provided each year is truly 'medically necessary,' given that more than 600,000 Iowans receive services under Medicaid. To compensate, the companies focus on managing the most expensive services, especially those that are long-term. This includes longer term inpatient and outpatient services, including home health and home- and community-based services for individuals with disabilities, and nursing and residential care facilities."

…”Additionally, the MCOs in Iowa and most other states are publicly traded, for-profit companies. Their management is under pressure to constantly produce better financial results for shareholders, meaning taxpayer dollars that previously paid for Medicaid services are now set aside for profits. This puts the most expensive services at even greater risk for reductions by the MCOs regardless of the outcome."

Iowa House passes Medicaid cleanup bill in effort to address managed care woes 

by Brianne Pfannenstiel, bpfannenst@dmreg.com, 3/8/18

“The Iowa House of Representatives approved legislation Thursday that lawmakers said would begin to fix some of the problems that have plagued the state's Medicaid system. "

...“The Iowa House of Representatives approved legislation Thursday that lawmakers said would begin to fix some of the problems that have plagued the state's Medicaid system. “

Facing the Housing Crisis for DD with a Diversity of Solutions

NOS Magazine is a “news and commentary source for thought and analysis about neurodiversity culture and representation”. For the uninitiated, neurodiversity is a controversial approach to disability that includes the belief that autism and other disabilities are a normal variation of human behavior and should be accepted as a social category on a par with gender, ethnicity, and sexual orientation. According to the NOS Website, “NOS stands for ‘Not Otherwise Specified,’ a tongue-in-cheek reference to when a condition does not strictly fit the diagnostic criteria, or is in some way out of the ordinary.”

NOS published an article entitled "Developmental Disability Community Faces a Housing Crisis" by Cal Montgomery on 4/5/18. The author begins by referring to an article published in USA Today, “Don't let my son plunge off the 'disability cliff' when I'm gone” by Michael Bérubé on 4/2/18, where the father of a son with intellectual disabilities describes the common experience of parents of adults with ID working to create a balance so that their son has opportunities to live as independently as possible with the supports he needs to do that: “Our experiences have shown us how much help people with intellectual disabilities need to live independently. That paradox divides the disability community.”

Bérubé also puts in a plug for “intentional communities” that “integrate people people with intellectual disabilities into communities in meaningful ways, 24 hours a day, 7 days a week…We must nourish and support these social arrangements; they are a powerful social good.”

Intentional communities are one solution (certainly not the only one) to the housing crisis that the author ironically rejects, based on the idea that they are too institutional and therefore should be cut off from Home and Community-Based Services funding and forced to apply for Medicaid funding for institutional settings. There is an undercurrent of resentment toward people who can benefit from and want to live in congregate settings (settings serving more than 3 or 4 people with disabilities together) and whose safety and well-being could be jeopardized in “scattered-site housing”, the ideal setting promoted here for everyone who is not in an institution. It seems, according to the NOS article, that HCBS funds belong to those who want and need services restricted to the setting that the HCBS advocates are promoting. It seems that those with more extensive needs who need something different are taking funding they are not entitled to if they choose to live in an intentional community.

In regard to institutions, the NOS article is misleading. It implies that Intermediate Care Facilities for people with Intellectual Disabilities (ICFs/IID) are readily available to people with more severe disabilities who need more controlled environments. In fact, some states have closed all their ICFs, many have severely limited or ended admissions, and others have made it nearly impossible for individuals needing this level of care to access it. These barriers have been put in place with the approval and support of most of the groups now pretending to promote an ICF as an acceptable alternative to community settings. [In the case of the advocates interviewed for the NOS article, that includes ASAN, the ACLU, IPADDUnite!, and ADAPT.]  

Furthermore, the word "institution" is used here only in a pejorative sense that is not shared by individuals and families who have experienced the life-saving services available in these facilities.

In addition, the author disparages Misericordia, a large campus-like setting in Chicago that serves 600 people with intellectual and developmental disabilities both on and off the campus in a variety of settings. Misericordia has built a “community of care” over decades responding to the many and changing needs of the people they serve. You need to see it to believe it - I encourage anyone who is in the Chicago area and interested in the services provided to schedule a tour and talk to the residents and their families who fully support Misericordia and its mission. 

The author also puts in a dig at VOR by getting the name wrong and misrepresenting what VOR stands for. I have been a member of VOR for over 15 years.

I sent comments to NOS Magazine to point out inaccuracies and misconceptions in the article. My comments did not make it through the moderation process, so I will publish them here: 

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In response to this article: 

I have two adult sons with profound physical and intellectual disabilities who live in a group home that provides for their extensive needs in a setting with four other adults with similar needs. I have also been a member of VOR for more than 15 years. 

1. Although there is a housing crisis for people with disabilities, Home and Community-based Services (HCBS) can be provided almost anywhere that a person with a disability lives. Nevertheless, CMS has imposed on states and individuals with disabilities the regulation of settings, ie. housing, rather than services. The 2014 HCBS settings rule unnecessarily restricts individual choice and seems to demand full integration into “the community” to justify HCBS funding when the ADA requires integration “appropriate to the needs of the individual”. The most pressing crisis that threatens the system of community care is the low pay and poor working conditions for direct service providers. Raising the pay, improving benefits, and honoring the importance of these service providers is something we can all get behind, rather than spending energy and resources closing programs and dividing the disability community into Us vs. Them. 

2. What is an Institution? In Medicaid law, institutional services cover mainly Intermediate Care Facilities for people with ID (ICFs/IID), nursing facilities, and hospitals for mental diseases. ICFs/IID are an “optional” program under Medicaid that originally was a companion program to HCBS (also optional), allowing states to waive certain requirements for ICFs to pay for community care. Nothing prohibits institutional care for those who need it, so why is CMS trying to restrict funding to settings that resemble an institution, when an actual institution is OK? One other point, although an ICF/IID may be as small as a 4-person group home, not all settings with 4 or more people are “institutions” and there is no justification for using this arbitrary number for defining a setting as being too institutional. 

3. The name of VOR is VOR! The organization was founded in 1983 as “Voice of the Retarded”. As the terms mentally retarded and the word handicapped were used less frequently, the terminology in federal law began to change. Most disability organizations (including VOR) removed the word "Retarded" from their names and from the discussion of issues related to this segment of the DD population. So when you see the acronym VOR, think “Voice of Reason”, to help you identify who we are. Also, check out “About VOR”  for positions and policy statements. We are often misrepresented by other advocacy groups. If you insist on calling VOR “Voice of the Retarded”, then for the sake of consistency, you must also refer to The ARC as the "Association for Retarded Citizens" and TASH as 'The Association for the Severely Handicapped". 

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See also:

Coalition for Community Choice

Together for Choice

Letter to CMS from over sixty organizations and advocates supporting a full range of options for people with ID/DD

Organizations supporting a full range of services and residential options: "one size does not fit all"

The following is a letter dated 4/10/18 addressed to officials at the U.S. Department of Health and Human Services from over 60 community organizations and advocates for people with developmental and intellectual disabilities. It is in response to demands from HCBSadvocacy.org, representing 20 organizations, that would force almost all adults with intellectual and developmental disabilities (I/DD) into small, dispersed residential and vocational settings. Congregate settings that serve more than three or four people with disabilities together would generally no longer be eligible for Home and Community-Based Services (HCBS) funding – whether or not those are appropriate or desired by Medicaid Waiver recipients. [Special Medicaid waivers fund Home and Community Based Services for people with developmental and other disabilities.] HCBS is regulated by the federal Centers for Medicare and Medicaid Services (CMS).

Here are the email addresses of people who received the letter, in case others wish to follow up with their own comments:

Secretary of Health and Human Services Alex Azar: Secretary@hhs.gov

Administrator Seema Verma: Seema.Verma@cms.hhs.gov

Calder Lynch: Calder.Lynch@cms.hhs.gov

Vu Ritchie: vu.ritchie@cmas.hhs.gov

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April 10, 2018

Dear Secretary Azar, Administrator Verma and Mr. Lynch:

We are writing in response to the alarming demands for an expanded process of heightened scrutiny submitted by the Center for Public Representation and the National Health Law Program on behalf of twenty organizations (henceforth referred to as “the HCBS Advocacy Coalition”) determined to force all adults with intellectual and developmental disabilities (I/DD) into small, dispersed residential and vocational settings – whether or not those are appropriate or even desired by waiver recipients.

We applaud CMS’ desire to support adults with I/DD in community settings, and completely agree that those who want to live and work in the greater community should receive whatever services they require to succeed. However, the campaign to solely fund small, dispersed, “integrated” settings is just as dangerous, paternalistic, and ideological as the forcible institutionalization of the mid-20th century to which it responds. We reiterate, because this one point should be sufficient to end this debate, that this is an ideological crusade rather than an evidence-based agenda: although the aforementioned advocates have long maintained that “studies” show that small, dispersed settings are best for adults with I/DD, an independent review of the literature by Dr. David Mandell, ScD., Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, found that, although “decisions about [residential] care may have the most profound effect on well-being and happiness…our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”

Not only is there no scientific evidence behind the one-size-fits-all model of residential and vocational supports, but the lack of more intensive, structured settings for our most impaired adults has resulted in catastrophic consequences. Mandell notes that “today, media exposés of abuses in community settings rival those of psychiatric hospitals a generation before.” Recent investigations of group homes in New York, Chicago and Philadelphia found rampant abuse and neglect in small, dispersed settings that, as Mandell reports, “often are not up for the task of caring for individuals with more profound impairments.” Undoubtedly, it was his fear of exactly these outcomes that motivated Justice Anthony Kennedy to warn, in his concurring opinion to the 1999 Olmstead decision, “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 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.”

But this debate isn’t just about those with the most severe intellectual and developmental disabilities. Many Americans choose to live with peers in retirement, religious and ethnic communities – there’s even an “adult dorm” in Syracuse for lonely Millennials. It is only when adults with I/DD choose to live and work with their peers that opponents claim these settings are “isolating” and “segregating” – resulting in the heartbreaking irony that adults with I/DD represent the only population in this country denied the civil right to decide where and with whom they live, and that this outcome is largely due to the influence of groups allegedly concerned with preserving the rights of the disabled. It is the height of arrogance for the HCBS Advocacy Coalition to insist it knows what’s best, even as applications pile up for new projects like First Place in Arizona, which consists of 55 apartments for adults with autism, and the 97-unit The Arc Jacksonville Village in Florida. We encourage you to visit these communities, as well as others all over the country whose names and contact information we would be happy to provide.

On a practical level, the more elaborate process of heightened scrutiny demanded by the HCBS Advocacy Coalition would devour the time and funding of already stretched agencies. Almost two hundred thousand individuals with I/DD were on waiting lists for Medicaid long-term supports and services as of June 2015. [emphasis added] We need to foster a creative environment in which adults with I/DD and their families are encouraged to work with providers to develop the environments they want. What we absolutely do not need is a landscape dominated by even more bureaucratic obstacles.

Importantly, this vision is very much in line with the Final [Settings] Rule as it was originally articulated by CMS. It acknowledged that regulations should be more “outcome-oriented…rather than based solely on a setting’s location, geography, or physical characteristics.” Secretary Price and Administrator Verma similarly emphasized the need for choice in their March 14, 2017 letter to the states’ governors, in which they expressed their commitment “to a new era for the federal and state Medicaid partnership where states have more freedom to design programs that meet the spectrum of diverse needs of their Medicaid population.” They noted that the states “are in the best position to assess the unique needs of their respective Medicaid-eligible populations and to drive reforms that result in better health outcomes.”

It is in line with these priorities as articulated by your own agency – as well as by the ADA and the Olmstead decision – that we ask you to retract the contradictory guidance that stigmatized farmsteads, gated communities, clustered housing and, more generally, all disability-specific settings as “isolating.” Not only does Federal law support the right of choice, but the concept of person-centered planning on which our system of service delivery is based mandates that these important decisions be made exclusively by waiver recipients and their families, from the most expansive range of home and workplace settings possible.
We look forward to participating in this critical conversation. 

Correspondence may be addressed to Amy Lutz via email at amy@easifoundation.org or by mail to EASI Foundation, P.O. Box 351, Villanova, PA 19085. 

Best, 

Together for Choice (NV)

Autism Science Foundation (NY)

ACCSES (DC)

VOR (IL)

Autism New Jersey (NJ)

Madison House Autism Foundation (MD)

EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled (PA)

Bergen County United Way (NJ)

Advocates for Community Choice (MO)

Special Moms Network LLC (NY)

...and many more

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See the original 4/10/18 letter for complete information on references and the list of organizations signing on.

HCBSadvocacy.org

Olmstead Resources

The Federal Government's Quiet War Against Adults with Autism 

Legal Vulnerabilities of CMS’s Regulation of Home- and Community-Based “Settings”

Majority of people with Intellectual and Developmental Disabilities live with their families; only 13.5% in supervised residential settings

Data from "State of the States in Intellectual and Developmental Disabilities" 2015 

This is something to consider when family voices are discounted or dismissed for lack of "authenticity" when they speak on behalf of their disabled family members.

Many advocacy organizations promote the idea that if we close all institutions and other congregate settings (only 13.5% of people with IDD live in such settings), we will save vast amounts of money that can then go toward everyone living in their own home or with their families. The vast majority of people with IDD already live in their own homes or with their families, and yet we still have a nationwide crisis in care and housing for people with disabilities. To solve the crisis, we need to take a bold look at our nation's priorities and find the funds to pay for the services needed, rather than cannibalizing programs (such as supervised residential settings) that are more costly because they serve people who are the most vulnerable and hardest to care for. 

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5.1 million = Number of people with Intellectual and Developmental Disabilities (IDD)

13.5% or 604,200 live in a supervised residential setting.

15.7% or 795,700 live alone or with a roommate.

71% or 3.6 million live with a Family Caregiver :

• 24.0% of the 3.6 million live with caregivers over 60 years old. 
• 35.0% of the 3.6 million live with caregivers 41-59 years old 
• 41.0% of the 3.6 million live with family caregivers less than 41 years old. 

Reflections on Disability Tribalism

This is what happens when you google yourself. You discover things you wrote or commented on years ago that you have completely forgotten about. I don’t recommend the Self-Google, but at least I am prepared now with an explanation if someone confuses me with a fitness columnist from the Montreal Gazette who has the same name.

I wrote this comment on disability neurotribes in September 2015, after the publication of the book “Neurotribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman. I was commenting on a review in Psychology Today  of “Neurotribes” by Amy Lutz, the parent of a son with severe autism. She took issue with Silberman’s characterizing autism as a “strange gift”, having experienced the most profound and extreme manifestations of the disabling disorder for the segment of the population like her son.

There was a reply to my comment from Silberman, rebuking me partly for commenting on his book without having read it. It’s true, I had not read it although I still plan to read it when I get the time. But good grief! The book is over 500 pages long and it has no immediate application to the everyday experience of my sons. I will read it one day when I am not waiting for the next phone call about Danny’s next trip to the emergency room for seizures or pneumonia. But my point is that disability tribalism can take an ugly turn when it is  applied to demand uniformity of thought and allegiance to beliefs that are based on half-truths and overly broad generalizations.

This is what I wrote in September 2015: 

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Autism Tribes?

Submitted by Jill Barker on September 29, 2015 - 11:21am

One of the most persistent problems in the realm of disability is the impulse to label and classify people to the point where they lose their individuality and we can’t see the trees through the forest. We all do that as a way of making sense of our world, but it stops having any practical value when we impose our generalizations on everyone who has been assigned a particular label.

I haven’t read Steve Silberman’s book on neurodiversity, but I wonder how a group as diverse as people with autism can be called tribal. I have two sons with profound intellectual disabilities and severe cerebral palsy. I have met people with physical disabilities as severe as my sons who communicate and think as well as most people and have formed what you might call tribal bonds with others with similar disabilities. Their allegiance to their own tribe is probably personally satisfying, but it does not give them license to dictate to people like my sons and their families what they are supposed to need and want. This in fact happens when disability self-advocates support the elimination of services and residential housing that they personally abhor, but are needed by people with higher support needs who lack the ability to make decisions for themselves.

I have known families torn apart by the lack of services to help them with a family member with dangerous behaviors or overwhelming medical and personal care needs. Nothing is gained by pretending that these situations don’t exist or that failure to provide for these needs has anything to do with the character and competence of family members.

"Representative Payees" and the expanded role of Protection & Advocacy Agencies

The Strengthening Protections for Social Security Beneficiaries Act of 2018 was recently passed by Congress and signed by the President. 

Protection and Advocacy (P&A) agencies will play a major role in the monitoring and oversight of the Representative Payee program under the Social Security Administration. Representative Payees are appointed by the SSA to manage Social Security benefits for people who are unable to handle them on their own. As adults, most people with DD qualify for Supplemental Security Income (SSI) and Social Security disability benefits after a parent dies, retires, or becomes disabled.

P&As are mandated by the DD Act of 2000 to protect the rights of individuals with developmental disabilities. These federally-funded agencies have different names in different states: for example, in Michigan P&A is called Michigan Protection and Advocacy Services (MPAS); in Ohio it is Disability Rights Ohio (DRO); and in Illinois it is Equip for Equality.

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This is what I have discovered so far about about the Strengthening Protections for Social Security Beneficiaries Act of 2018 and the new role for Protection and Advocacy:

The legislative history of the Act explains the changes in Social Security Administration (SSA) policy in regard to selecting and monitoring Representative Payees for beneficiaries who are unable to handle their benefits on their own. The rationale for changes to SSA policies is based on reports and reviews from the Social Security Advisory Board, the National Academy of Sciences, and the Government Accountability Office (GAO). [Links to these reports and others are in the footnotes for the legislative history]. The problem with the reports and studies that I have seen on representative payees is similar to reports on guardianship. The data available on abuse is mostly anecdotal with sensational cases being used to justify major changes to the system. In my opinion, the data is not reliable or complete enough to draw conclusions generally on what is wrong with the system and how it affects individual beneficiaries.

The SSA is attempting to improve the way it selects, oversees, and monitors representative payees by having Protection and Advocacy agencies take over this function that was previously been done by another vendor. An annual grant of not less $25 million will be distributed among P&A agencies for purposes specified in the Act.

In addition, “The SSA also would issue an annual grant to a highly-qualified national disability association to provide training and other support for the review program to the SSA and the P&A agencies. The Committee expects the SSA, P&A system, and national association to work together in partnership to ensure an effective and efficient review process, over which the SSA would retain oversight responsibilities.” The "national disability association" is not specified by name in the law.

From the legislative history:

Currently, “The SSA primarily relies on annual accounting reports and periodic on-site reviews to monitor the performance of representative payees and ensure benefits are being used properly. The Social Security Act requires on-site reviews for certain organizational and individual payees, and the SSA conducts additional discretionary reviews of other payees."

“By law, the SSA is required to conduct periodic on-site reviews for three categories of payees: individual payees with 15 or more beneficiaries; all non-profit, community-based social service organizations; and any other type of agency with 50 or more beneficiaries. The law also requires the SSA to conduct on-site reviews of state mental institutions. …”

Under the new law, accounting forms will no longer be required of individual payees who live with the beneficiary and are parents or spouses of the person receiving benefits. P&As will do on-site visits rather than rely on accounting forms to find abuse in the system. P&As may pursue additional monitoring activities based on what they find from their on-site reviews. According to the new law, in conducting reviews, a protection and advocacy system “shall have the same authorities, including access to records, facilities, and persons, as such system would have for purposes of providing services under subtitle C of title I of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15041 et seq.).”

The new law also promotes information sharing between states and the SSA with agencies that have information on current or potential representative payees who may have been found untrustworthy through state Adult and Child Protective Services investigations and state hearings or investigations of court-appointed guardians.

The legislative history heaps praise on the Protection and Advocacy system that may not be deserved, considering that P&As have rarely been held to account for complaints against them by families and some advocacy organizations that object to P&As promoting an ideology of full inclusion* rather than protecting the individual rights of people with developmental and other disabilities as the law requires: 

[* full inclusion refers to the belief that people with disabilities should be completely integrated in "the community" receiving services in settings with people who are not disabled; more than 3 or 4 people with disabilities grouped or living together to receive services is considered segregated and isolating, regardless of the severity or nature of the disabilities or the need for specialized services and settings.]

“The new provision recognizes the superior training, experience, and track record of the nationwide P&A system, which began to do reviews on behalf of the SSA after the Henry’s Turkey Service abuses were uncovered. The SSA turned to the NDRN (the nationwide representative of the state P&A systems) in 2009 because of their previously-established relationship through the Protection and Advocacy for Beneficiaries of Social Security program, and NDRN’s long experience protecting and advocating for persons with disabilities.”

“Because P&A agencies are located in each state and territory, and have extensive contacts in their local communities, they receive reports from the community alerting them to beneficiaries who may be experiencing neglect or abuse. “

“The models do not incorporate other information that might indicate risk, such as housing code violations, reports of abuse of residents, high staff turnover, and so forth. Because of P&A agencies’ relationships in their local communities, in combination with their other work, they may be in a better position to identify and review risky payees.”

Whether P&A agencies would continue to promote their agenda over the rights of individuals under the new law, remains to be seen. There is nothing mentioned in the legislative history or in the law that offers protections against this. Because most representative payees, as well as guardians, are family members or personal friends of the individual beneficiaries, they (we) are a problem for the government-funded agencies and advocacy organizations because our loved-ones are more important to us than advancing their ideology.

Changes to Immigration Policy and its Effects on Caregiving

The following are excerpts from a Kaiser Health News (KHN) article, “As Trump Targets Immigrants, Elderly Brace To Lose Caregivers”, by Melissa Bailey, 3/26/18. Changes in immigration policy exacerbate the ability to hire caregivers for people who need Long Term Services and Supports (LTSS). The emphasis here is mostly on the effects on the elderly population, but it applies also to people with disabilities who rely on Medicaid to pay for caregivers.

There have been many alarming stories about the shortage of caregivers and the reasons for it: low pay, lack of respect for the work that these people do, and few incentives to attract reliable high quality workers to care for our loved ones.

Read the full story to get an idea of the impact of immigration changes on the personal lives of people needing the services of caregivers and the caregivers themselves. Many of the excerpts below are a reminder of how big a problem this is and how little has been done to improve the situation.

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"Nirva [a Haitian caregiver] is one of about 59,000 Haitians living in the U.S. under Temporary Protected Status (TPS), a humanitarian program that gave them permission to work and live here after the January 2010 earthquake devastated their country. Many work in health care, often in grueling, low-wage jobs as nursing assistants or home health aides"

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“Ending TPS for Haitians ‘will have a devastating impact on the ability of skilled nursing facilities to provide quality care to frail and disabled residents,’ warned Tara Gregorio, president of the Massachusetts Senior Care Association, which represents 400 elder care facilities, in a letter published in The Boston Globe. Nursing facilities employ about 4,300 Haitians across the state, she said.

“‘We are very concerned about the threat of losing these dedicated, hardworking individuals, particularly at a time when we cannot afford to lose workers,’ Gregorio said in a recent interview. In Massachusetts, 1 in 7 certified nursing assistant (CNA) positions are vacant, a shortage of 3,000 workers, she said.”

“Nationwide, 1 million immigrants work in direct care — as CNAs, personal care attendants or home health aides — according to the Paraprofessional Healthcare Institute, a New York-based organization that studies the workforce. Immigrants make up 1 in 4 workers, said Robert Espinoza, PHI’s vice president of policy. Turnover is high, he said, because the work is difficult and wages are low. The median wage for personal care attendants and home health aides is $10.66 per hour, and $12.78 per hour for CNAs. Workers often receive little training and leave when they find higher-paying jobs at retail counters or fast-food restaurants, he said.

“The country faces a severe shortage in home health aides. With 10,000 baby boomers turning 65 each day, an even more serious shortfall lies ahead, according to Paul Osterman, a professor at Massachusetts Institute of Technology’s Sloan School of Management. He predicts a national shortfall of 151,000 direct care workers by 2030, a gap that will grow to 355,000 by 2040. That shortage will escalate if immigrant workers lose work permits, or if other industries raise wages and lure away direct care workers, he said.”

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“It’s not clear how many direct care workers rely on TPS, but PHI calculates there are 34,600 who are non-U.S. citizens from Haiti, El Salvador, Nicaragua (for which TPS is ending next year) and Honduras, whose TPS designation expires in July. In addition, another 11,000 come from countries affected by Trump’s travel ban, primarily from Somalia and Iran, and about 69,800 are non-U.S. citizens from Mexico, PHI’s Espinoza said. Even immigrants with secure legal status may be affected when family members are deported, he noted. Under Trump, non-criminal immigration arrests have doubled.”

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“'What people don’t seem to understand is that people from other countries really are the backbone of long-term care,' said Sister Jacquelyn McCarthy, CEO of Bethany Health Care Center in Framingham, Mass., which runs a nursing home with 170 patients. She has eight Haitian and Salvadoran workers with TPS, mostly certified nursing assistants. They show up reliably for 4:30 a.m. shifts and never call out sick, she said. Many of them have worked there for over five years. She said she already has six CNA vacancies and can’t afford to lose more.”

KHN’s coverage of these topics is supported by Gordon and Betty Moore Foundation and John A. Hartford Foundation

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

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For more information see:

PHI (Paraprofessional Healthcare Institute)

"Severe Shortage of Home Health Workers Robs Thousands of Proper Care" by Judith Graham, 4/26/17