Montana non-profit service providers echo funding problems found in other states.

In an opinion piece from 9/26/16, from a Montana news site Missoulian.com, Jesse Dunn and five other co-signers from non-profit organizations, make a case for the difficulties of providing quality services to people with developmental disabilities when funding has not kept pace with requirements for maintaining and improving care:

Funding needed to responsibly care for individuals with developmental disabilities

“The Montana Department of Public Health and Human Services administers a variety of programs funded by state and federal appropriations to pay for the services provided by the nonprofit direct care providers. Sadly, the funding levels for disability services have lagged over the past decade and failed to meet the rising costs of providing essential services to this special population. Consequently, hiring and retaining qualified, experienced direct care providers has become a near crisis situation. Vacancies, high turnover rates and inadequately experienced care givers plague human service nonprofits, obstructing the mission to enhance our clients’ quality of life. Nonprofits need an adequate number of qualified staff to responsibly care for eligible individuals. Further, the laws regulating support services for people with disabilities mandate staff-to-client ratios to ensure safe and effective client care.

"However, those staffing challenges are getting worse as inflation, mandated government regulations and rising standards of care all keep driving up the cost of providing services. Those of us who belong to the Montana Association of Community Disability Services wish to highlight this issue on behalf of those with developmental and intellectual disabilities whom we serve. For us, it is unconscionable to watch our nonprofit agencies slip further behind and sacrifice quality care for those who are severely disabled. We believe we must educate the public and lawmakers to the plight of these nonprofit agencies that represent an otherwise voiceless community for whom we advocate.

"It is our wish that those who care about the quality of life and safety of individuals who experience disabilities will join us in calling for a review of the current funding mechanisms…

"The funding deficit is not limited to direct care staff but also, with such complex billing and reporting obligations that go along with state and federal programs, there is a crucial need for sophisticated financial management and internal controls. The level of expertise and experience needed to track, control, report and manage the range of different government-financed programs that fund the services nonprofits provide is expensive. Thus, we need adequate funding for both direct care services and for the required financial management and accountability that nonprofits seek.

"…Please join us in getting this message out on behalf of those who do not have a voice in the public policy process."

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Well-said, Montana service providers!

Read the full article here...

Groundbreaking Survey of Families of Adults with DD

“….Dispels myths, shows institutional homes are part of our communities”

I’m not often quoted in press releases, but this has to do with a committee that I chair for VOR. We conducted a survey that gathered perspectives of families of individuals with profound disabilities who receive care in Medicaid Intermediate Care Facilities (ICFs) or in home and community-based settings.

VOR is a national nonprofit organization that advocates for individuals with intellectual and developmental disabilities, including autism. We are the only national organization that advocates for a full range of residential and service options for people with intellectual and developmental disabilities, including own home, community-based, and larger settings, such as licensed Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID).

Here is the press release for the survey report.

VOR represents a large number of families whose family members have severe to profound disabilities that are complicated by the presence of multiple disabilities, medical fragility, or severe behavioral challenges. Many, but not all, live in institutional settings, and have needs that are often overwhelming for families and smaller community settings such as group homes. We were able to gather responses from families and guardians in thirty states, representing 117 Intermediate Care Facilities (ICF/IID) and compare them with responses from families and guardians of people who lived in smaller community homes. 

Individuals who live in Medicaid-funded ICFs/IDD receive an institutional level of care. As a bundled service program, Medicaid ICF settings provide a set of services according to a standardized set of guidelines across the nation. The “Social Security Act created this benefit to fund ‘institutions’ (4 or more residents) for individuals with intellectual disabilities, and specifies that these institutions must provide ‘active treatment,’ as defined by the Secretary” [Centers for Medicare & Medicaid Services(CMS)].

The conclusions we reached from the survey results were:

• The responses to the ICF survey revealed a sharp contrast between common misperceptions of “institutions” as segregating and isolating environments and the perceptions of family members and guardians of individuals living in these settings. 
• Based on their own experiences, ICF respondents indicated a high level of satisfaction with their individuals’ ICF homes, staff competency, access to services and community integration. 
• Non-ICF respondents expressed general satisfaction in measures relating to integration, access to services, staff competency, and vocational opportunities but were evenly divided over whether their individuals would do poorly or well in an ICF as an alternative setting. ICF respondents by a strong majority believed that their individual would do poorly in a non-ICF community setting. 
• Most respondents for both surveys were informed about alternatives to their individuals’ current placements based on their own evaluations of different settings and, in some cases, the individuals’ prior placements in other settings. 

Especially revealing were the personal examples and responses provided by respondents, primarily families, in response to this question:

“What would you like our government to know about the current move to de-institutionalize ICF residents in favor of small community-based facilities?”  

What mattered most to families of those receiving care in both ICF and Non-ICF settings was that their family members with I/DD received the care they needed and that their right to individual choice was respected. As so aptly stated by one respondent –

“Good public policies should be based on experience, common sense and humanity. There should be deference and respect for the positions of families who have first-hand experience in the care and treatment of persons with life-long disabilities” (ICF Survey respondent). 

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About VOR

from the Nonprofit Quarterly, July 2014:  "People as Pendulums: Deinstitutionalization and People with Intellectual and Developmental Disabilities" by Tamie Hopp, VOR Director of Government Relations & Advocacy

Bringing Home the Bacon

Is there such a thing as a multi-Billion dollar NONprofit? Yes, there is, and one of them is The ARC, the country's largest advocacy organization for people with developmental disabilities. 

An article in Fusion, a newsletter from the national ARC for September 29, 2014, covers a recent report from the National Center on Charitable Statistics of the Urban Institute. Based on a year's worth of data compiled from IRS 990 forms (the forms that most nonprofit organizations file annually with the IRS),  The ARC and its chapters throughout the United States have brought in $4.02 Billion in Gross Receipts, "…including $3.83 Billion in Total Revenue, $2.76 Billion in Program Service Revenue, $989 Million in Contributions & Grants (includes Government Grants) and $20 Million in Investment Income."

"Of the Total Contributions, Gifts and Grants, $145 Million is from individuals, foundations and corporations while $847 Million is from government…"

That's a lot of money! Of The ARC's total revenues of $3.83 Billion, $847 Million or 22% came from government, and  $145 Million or 3.8% from individual donations.

One can learn a lot about an organization from its IRS 990 forms, including its revenues, expenditures, and how much it pays its highest paid employees. Guidestar is a good place to start looking for information on nonprofit organizations. Registration is free. Here is Guidestar's Frequently Asked Questions about form 990.

Read the full article on The ARC's finances here.

Deinstitutionalization: Not a good idea for everyone with Severe Intellectual and Developmental Disabilities

This is an article that was written by Tamie Hopp, the Director of Government Relations & Advocacy for VOR, the only national organization that supports a full range of residential and service options for people with intellectual and developmental disabilities. This includes support for institutional care in Medicaid-funded Intermediate Care Facilities as well as group homes, home and community based services, and care provided in the home of a family member or friend. The article, "People as Pendulums...", gives a history of reforms to the system of care for people with disabilities, along with warnings that we have gone too far in closing institutions and other forms of congregate care (serving people with disabilities in groups of more than three).

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People as Pendulums: Institutions and People with Intellectual and Developmental Disabilities
Written by Tamie Hopp
Created on Wednesday, 16 July 2014 14:0 for the Nonprofit Quarterly

In 1965, then-Senator Robert Kennedy toured the Willowbrook institution in New York State and offered this grim description of the individuals residing in the overcrowded facility: “[They are] living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo.”[i]

The atrocities of Willowbrook ushered in a generation of advocates, nonprofit organizations, providers, and professionals who successfully pushed for massive reform, beginning in 1971 with the development of Medicaid Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR), later renamed as ICFs for Individuals with Intellectual Disabilities (ICFs/IID).

Families and advocates alike applauded this infusion of federal funding, licensing, and oversight for a program specifically designed to meet the needs of individuals with intellectual and developmental disabilities (I/DD).

Still, as the ICF/IID program grew, so did calls for housing alternatives. Critics emerged, claiming that the ICF/IID federal standards of care promoted a non-individualized, inefficient model of care, and, due to federal financing incentives, discouraged states from developing alternate service options.[ii] In 1981, Congress responded by providing for small (4-15 person) ICFs/IID and a Medicaid Home and Community-Based Services (HCBS) waiver, to allow states to “waive” certain ICF/IID requirements.

These early reforms were quite properly motivated by the need for a system of care and supports that responded to the very individualized and diverse needs of the entire population of people with I/DD. These reforms, however, also set the stage for decades of ongoing deinstitutionalization, resulting in the elimination of specialized housing, employment and education options for people with I/DD, leaving some to question the price of “progress.” 

The Pendulum Swings
 
Even though initial reforms were motivated by a lack of service options (an over-reliance on the ICF/IID program), it was not long before efforts to “rebalance” our system of care shifted from the expansion of options to the dramatic reduction of ICFs/IID and other specialized options.
 
In 1999, the Supreme Court handed down its landmark Olmstead v. L.C. decision, which should have settled the deinstitutionalization debate. The Court expressly cautioned against forced deinstitutionalization, the “termination of institutional settings for persons unable to handle or benefit from community settings,”[iii] finding instead that the Americans with Disabilities Act (ADA) only requires community placement when an individual’s treatment professionals determine community placement is appropriate, such placement is not opposed by the individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with disabilities.[iv]
 
However, masterful messaging by nonprofit organizations and federally funded lawyers with mission statements and funding aimed squarely at eliminating all “institutional” options quickly (and incorrectly) characterized Olmstead as a deinstitutionalization “mandate” requiring “community integration for everyone.”[v]   While deinstitutionalization proponents had successfully closed many ICF/IID homes by 1999, the time of the Olmstead decision, the decision has only further fueled their efforts in the years that followed.
 
Has the Pendulum Swung too Far?
 
According to Samuel Bagenstos, former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases, the population of state institutions for I/DD now stands at approximately 16 percent of its peak.[vi]
 
The exit of ICFs/IID from the service landscape created a vacuum that lured nonprofit and for-profit providers into the business of human services. Between 1977 and 2010, the number of residential settings that served people with I/DD increased by a remarkable 1,598 percent, with most of these new settings being small and privately operated. In 2010, non-state agencies served 98.5 percent of people living in places with 6 or fewer residents. The number of home and community-based services recipients outpaced residents receiving specialized Medicaid licensed ICFs/IID by 676.1%, while the number of people receiving ICFs/IID care decreased by 63 percent.[vii]
 
As early as 1993, then-U.S. Rep. Ron Wyden (D-OR) pointed to the problems created by an unchecked expansion of providers rushing in to fill a need. “Increasingly, millions of Americans with these life-long handicaps are at risk from poor quality of care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies,” wrote Wyden in a March 22, 1993 report in his capacity as Chairman of the Subcommittee on Regulation, Business Opportunities, and Technology of the U.S House Committee on Small Business.[viii]
 
In 2000, the American Prospect magazine reported similar problems in its article, “Neglect for Sale,” which investigated a disturbing trend of large for-profit corporate providers capitalizing on the then-$22 billion (now more than $40.5 billion) in government spending on services for people with disabilities, turning care for individuals with I/DD “into a major growth industry.”[ix]
 
“It should not be surprising,” Bagenstos wrote, “that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.”[x] State officials were not keen on investing in the development of adequate community services after being told closing ICFs/IID would save them money, resulting in inadequate funding and compromised care. Bagenstos acknowledges adequate investment in community services, especially due to the cost of quality staffing, will meet or exceed the cost of ICF/IID care.[xi]
 
These outcomes are made all the more tragic due to their predictability. The failed deinstitutionalization of the mentally ill should have been an important lesson learned. “As events played out, large state institutions [for the mentally ill] were indeed shut down in the 1970s, but the promise of high-quality community-based care collided with the fiscal cutbacks of the 1980s,” wrote Eyal Press, author of “Neglect for Sale.”[xii]   Homelessness, incarceration and violence raise questions about “whether society’s concern for the constitutional rights of people with mental illness has led to their abandonment.”[xiii]
 
Predictable Tragedies as the Price of Progress
 
Even if some license is afforded to “hope”—a “hope” that history would not repeat itself when deinstitutionalizing individuals with I/DD—there is no excuse for continuing down a path that has in its wake repeated, widely reported tragedies in small settings for people with I/DD.
 
More than 150 media reports in more than 30 states since 1997 reveal systemic concerns in small settings for people with I/DD, including deaths, abuse, neglect, and financial malfeasance. In November 2011, the New York Times wrote that more than 1,200 people with I/DD in the past decade have died in group homes due to “unnatural or unknown causes.”[xiv] U.S. Senator Chris Murphy (D-CT) has called for a U.S. Department of Health and Human Services Office of Inspector General investigation to “focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.” [xv]
 
Georgia offers a particularly poignant example of the extremes by which “success” is defined by proponents of forced deinstitutionalization. An October 2012 federal settlement calls for the transition of its I/DD residents from ICFs/IID to community settings. In 2013, the state’s own reports showed that 10 percent (40 people) of those transferred to community settings in 2013 had died.[xvi]   Yet, United Cerebral Palsy, a national nonprofit organization, ranked Georgia fourth in the nation for its successful community inclusion of people with I/DD.[xvii]
 
Other symptoms of failed deinstitutionalization are less obvious, but no less harmful to people with I/DD. Waiting lists for I/DD services now number nearly 317,000 people,[xviii] emergency rooms have become de facto urgent care clinics for people with I/DD, and correctional facilities are replacement treatment centers for some individuals who experience both mental illness and developmental disabilities.
 
Conclusion: Why does this continue?
 
The original goal of deinstitutionalization, to provide opportunity to individuals not appropriately institutionalized and “rebalance” the system, was shared by advocates.
We have passed the 50 percent mark in most states—that point of “balance” when half the Medicaid funding for people with I/DD was spent on HCBS options and half on facility-based (“institutional”) options. In fact, the United Cerebral Palsy reported that “38 states now meet the 80/80 Community standard, which means that at least 80 percent of all individuals with ID/DD are served in the community and 80 percent of all resources spent on those with ID/DD are for community support.”[xix]
 
As advocates marched toward “balance,” and in most states exceed it, tragedies followed and seem to be more widespread. These tragedies, which should have been a wake-up call, have done nothing to stem aggressive deinstitutionalization. State-level fiscal conservatives still loathe spending money, yet safely serving people with complex needs requires adequate funding. Proponents for “community integration for everyone”—advocates, nonprofit organizations, federal agencies and providers—have a lot at stake, past and present. To change paths now is to admit failure and risk future funding.
 
Lost in this debate is concern for the individual. Person-centered planning, which is held up as the ideal by advocates, nonprofit organizations, and government alike, is short-changed by system-change advocacy to eliminate specialized care options for those who need it. Instead, we must figure out ways to meet individual needs versus wholesale approaches to providing care that end up being as bad as or worse than having an institution as the only option.
 
The legal framework is in place to support individualized care and choice. Advocates must set aside efforts to eliminate options of care and work together to expand options. This begins with a commitment to serving each individual: true person-centered planning.

Tamie Hopp is the Director of Government Relations & Advocacy with VOR, a national nonprofit organization advocating for high quality care and human rights for people with intellectual and developmental disabilities. For more information, visit www.vor.net.

See this article on-line to read the footnotes.

See also VOR's documentation of abuse and neglect in small settings.

Special Dreams Farm in St. Clair Township, Michigan

The Detroit Free Press featured an article today - Special Dreams Farm offers life skills to special-needs adults by Alexandra Bahou - about a Michigan farm designed for developmentally disabled adults who want to be active, outdoors, and learn life skills on a farm.

Special Dreams Farm was founded by parents of developmentally disabled adults in 2004. The farmers first worked on private farms until the non-profit organization bought a 31-acre farm in St. Claire Township north of Detroit in 2008. The Farm relies heavily on private donations, fundraisers, and grants for its $140,000 per year operating costs. The farmers are not paid, but they learn skills that help them be more independent. The video and photographs that accompany the article show the delight with which these adults approach their activities on the farm and the close bonds they have with each other and the job coaches and volunteers who work with them.

To learn more about the Special Dreams Farm, go to the Website. 

Here is a page on the Website that has many photographs of the farm and two videos about the farm and how it it came to be.

Nonprofits benefit from soaring Medicaid costs in New York

It is always instructive to look at how other states provide services to people with developmental disabilities. At the very least, we may learn what not to do.The New York Times has been investigating the crisis-in-care for people with developmental disabilities in New York and has come across some eye-opening discoveries on how Medicaid money is spent.

This article, Aiding Disabled, Nonprofits Rake in State Money by Russ Buettner, is one of the latest in a series. Community Habilitation is a state home care program that provides Medicaid Home and Community Based Services to people with DD. (Michigan's DD waiver services fall under the Habilitation Supports Waiver. Waiver services can vary from state to state.) According to the article, spending for this program has increased more than 40% over the past three years with much of the benefit going to the nonprofits who provide the services.

In New York, providers determine the services through an individualized plan and are reimbursed on a fee-for-service basis, with the fee negotiated with the state. Over all, providers are reimbursed about $40 per hour to pay for a program with little overhead. Workers, who provide the services in the homes of consumers, are paid only an average of $10 - $15 per hour. Medicare provides similar services to senior citizens, but the median reimbursement rate is $21 per hour.

The nonprofits are the proverbial foxes-guarding-the-hen-house and are apparently using the extra Medicaid dollars to pad executive salaries and build up reserves in their organizations. The state is considering doing away with the fee-for-service reimbursements and revising its incentive system to focus more on quality than quantity of services.

Here is a description of other financial shenanigans by nonprofits in New York.