Thursday, February 28, 2013

Wisconsin law: good for business, bad for victims of neglect and abuse

Tort reform refers to changes in civil (as opposed to criminal) justice systems that reduce litigation or damages. In Wisconsin, tort reform that was proposed ostensibly to make the state more welcoming for business and to prevent frivolous lawsuits, has made it more difficult to hold long-term care providers accountable for abuse and neglect of residents.  A law that went into effect in February 2011 bars families from using state investigation reports as evidence in civil lawsuits against nursing homes and other care facilities. Health investigation records are also inadmissible in criminal cases involving abuse and neglect by providers.

An article in, 2/17/13, describes the plight of a 32-year-old man with spina bifida, brain damage, and paralysis who lived in a group home in Menominee, Wisconsin. He developed a bedsore that was so severe that doctors feared that he could be permanently bedridden. A state health department investigation report found that he had the bedsore for four months before he was hospitalized, a fact that the group home provider did not report to the state or his mother as they were required to do. The mother is suing the group home provider for damages, but her attorney is barred from using the state reports as evidence of neglect in court because of the law.

The Wisconsin Hospital Association and Wisconsin Medical Society favor the law, arguing "that barring use of state investigation records in lawsuits and prosecutions lets providers discuss problems more openly, thereby improving patient care." Wisconsin's Governor Walker defended the law, "saying it was needed to forestall 'this constant pattern of litigation' that could be seen as a negative by employers. He added that 'frivolous lawsuits (are) a huge barrier to economic growth and development.'"

The severely disabled man is slowly recovering after nine months lying on his stomach in a hospital and receiving treatment for his wound. He now lives in a nursing home.

I have to remind myself that this is not Bizarro world. This is Wisconsin!

Monday, February 25, 2013

Lead poisoning in Detroit public school students linked to lower test scores

An article in the Detroit Free Press, "High lead poisoning linked to lower test scores in DPS" by Keith Matheny from 2/25/13, reports on research that matches blood test results for lead in 21,000 Detroit Public School students with those students' elementary and middle school standardized test scores:

"Children with lead at 2 to 5 micrograms per deciliter in their blood -- equal to or below stricter levels of concern set by the federal Centers for Disease Control and Prevention last year -- had a 33% higher likelihood of poor academic performance, said Harolyn Baker, a coauthor of the study and director of epidemiology at the nonprofit Michigan Healthcare Quality Improvement Organization.

"Students with blood lead levels greater than 5 micrograms per deciliter have a 50% chance of doing poorly on MEAP [Michigan Educational Assessment Program] tests, the study found."

Researchers factored out other possible causes of poor test performance related to maternal education, socioeconomic status, race, and gender to make sure that what researchers were seeing was related to lead levels in the blood. "The study updates research highlighted in-depth in the Free Press in 2010. That report found that of 39,199 DPS students tested as young children, only 23 had no lead in their bodies."

Here is a link to The DD News Blog post from May 2010 on the earlier study.

Thursday, February 21, 2013

Washington State Hearings on Respite Care 2/14/13

These are clips from hearings in the Washington State House Early Learning & Human Services Committee. The parents testifying have gone without services for their severely disabled children for years.

Washington State: Respite Care for the "No Paid Services" Caseload

Because We Care - Beyond Inclusion is a Washington State blog that advocates for a full continuum of care for people with intellectual disabilities and their families. 

Because We Care supports HB 1546, a bill before the Washington State legislature that would address some of the needs of 16,000 plus developmentally disabled clients who are eligible for services but do not receive any. They are called the "no paid services" case load. 

Among other things, the bill would make available funding to provide respite services for 4,000 people for the fiscal years 2014 and 2015. 

Many families who already have respite funding have difficulty finding providers who are reliable, competent, and willing to work for low pay. This blog post urges the DD system in Washington State to look beyond in-home care and consider the possibility of using specialized programs for people with DD already in place in schools, recreation departments, county park systems, and other center-based programs:

"By utilizing a center based respite we could pay the providers more than minimum wage which would add to provider stability,  have transportation to and/or from school for after school respite, provide respite right in the community, provide meaningful activities, have staff support (thereby not relying on one person to show up at your house – we have all experienced the unreliability of this situation which only adds to the family’s stress) and there are more eyes on everyone to help with prevention of negligent care."

This sounds good to me, but it is bucking the trend pushed by full inclusion advocates to eliminate disability-only services. The blog post has an answer for that: "Without respite our families are becoming socially excluded – isolated from community.  This is not what the inclusion movement was intended to do but it has become the reality for many families."

Tuesday, February 19, 2013

How Natural are Natural Supports?

Natural Supports
"Natural Supports" is the name given to unpaid care giving provided by a disabled person's family and friends. Unpaid caregivers should be supported and encouraged for all they do voluntarily for their disabled family members and friends. They should also be acknowledged for their important contribution to the overall support system for people with disabilities. But let's not glorify the virtues of Natural Supports as a way to avoid facing gaps in the system of care and the lack of paid services and residential options for people with developmental disabilities. 
VOR, a national organization that supports a full array of residential and service options for people with intellectual and developmental disabilities, addresses these issues in its November 16, 2012  newsletter in an article called "The Growing Burden on Caregivers: A Focus on Natural Supports".

According to the article: 

"In this difficult economy, policymakers are quite tempted to support and expand free natural supports. Some advocates leverage this temptation and oversell the virtues of natural supports while also seeking closure of specialized residential (large and small), supported employment, and other services…However, how “natural” is it for a middle aged person to be living with, and supported by, elderly parents? There are an unprecedented number of families in exactly that situation, arguably due to aggressive efforts over the years to dismantle specialized services and unreasonable pressure by advocates and states on families to take on caregiving ("natural support") duties in the family home…."

VOR concludes:

"..if a family has access to adequate natural supports and chooses this arrangement over specialized supports, VOR supports it. However, consistent with our mission in support of high quality care and human rights for all people with intellectual and developmental disabilities, natural supports should not be imposed on families when doing so creates an impossible burden on too few people to the detriment the individual’s and the family’s mental, physical and financial health, and indeed, risks separating the family unit itself."

The VOR newsletter gives some perspective on this issue and links to other articles and more information. This is a good place to begin examining an approach to serving people with DD that has many families wondering why public agencies that are supposed to be helping them are so intent on handing over more and more care giving responsibilities to the family."

A report on natural supports called "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities" came out of the Wingspread Family Support Summit, 3/6/11-3/8/11, in Racine, Wisconsin. Professional advocates, mostly from programs funded by the federal Developmental Disabilities Act, put their heads together and figured out how to get more funding for their organizations by enhancing the capacity of parents and other family members to be more accepting of their fate as caregivers and the prospect of making do with less for the foreseeable future. More about this later.

What do families really think about "Natural Supports"? A family group in Colorado surveyed 500 family members to find out. The results are here

Friday, February 15, 2013

Key Performance Indicators: Reading between the lines

I read reports, so you don't have to…

Here are some interesting tidbits of information from a Third quarter Review of Key Performance Indicators for Community Supports and Treatment Services (CSTS) for fiscal year 2011 to 2012. CSTS is the service arm (as opposed to the administrative arm) of our local Community Mental Health Agency. It primarily serves people with Developmental Disabilities and Mental Illness under a managed care system that mandates that all eligible people who qualify for Medicaid must receive services suitable to their condition.

The report admits to some major problems that I attribute to the poor economy, the atmosphere of hostility toward public employee unions, and an aging workforce that sees early retirement as the best option available: "… there has been an abnormally high retirement rate at the beginning of the calendar (middle of the fiscal year), resulting in significant turnover through all levels in the organization.  This turnover can attract new and enthusiastic staff members and it can also result in a relationship disruption for the consumer. Finally, CSTS has had a difficult time competing for exceptional staff due to economic conditions. "

Then there is this:

According to this graph, less than 30% of the developmentally disabled adults (DD.a) who live in the county receive services through CSTS. Some of them might receive services through other agencies, although it is doubtful that many do. Where are the missing 70% of people who, by definition, have significant disabilities, but do not receive services?

Last but not least, there's this:

The report claims that the "organization does an exceptional job serving individuals in a community setting and minimizing the use of a restrictive setting.  Those adults who are in restrictive settings require that level of care, a structured milieu and constant supervision and monitoring.  "

This means that 16% of adults with developmental disabilities (DDa) who are served by CSTS live in group homes. 84% of those served are in "nonrestrictive settings" and you can bet that most of those live at home with their families. For my sons who need a lot of care and 24/7 monitoring, caregivers who are themselves monitored and given support and backup, a group home is not restrictive. We don't know if the agency is doing an exceptional job until we talk to the families who might want a decent group home for their adult family members to live in, but do not trust the system to provide good care or don't know it is available.

Tuesday, February 5, 2013

NCD Report on Deinstitutionalization: Part 3

NCD report documents significant problems in community care

Although the National Council on Disability report on Deinstitutionalization places emphasis on the mechanics of closing state-operated facilities for people with DD, it also reveals, in spite of itself, significant problems with community care that are especially alarming for families of people who currently live in those facilities. I'm sure the NCD would claim that these problems can be overcome with careful planning or that the benefits of living in "the community" outweigh the "horrors" of institutional living. Nevertheless, the barriers to safe and adequate care in the community  are significant.

from the NCD report:
  • (page 27) The current fiscal constraints faced by states compound the challenge of developing and maintaining a strong community-based service system. Some states are cutting back on the amount of services they provide to each recipient or are limiting the number of service recipients.
  • (page 34) The resources dedicated to people with ID/DD vary significantly across states, as does the quality of both institutional and community-based services. In some states the system works relatively well, while in others it takes a lot of ingenuity and commitment on the part of the family to obtain high-quality community services.
  • (page 35) A community-based service system depends on the availability of affordable, usable housing, which is typically scarce. …Thus, people are often put on waiting lists or remain in their childhood homes far longer than they desire. One’s housing options should not determine what services one gets. All these factors need to be addressed in the plan.
  • (page 35) Under the Medicaid HCBS waiver program, states have considerable flexibility in determining the type of services they will provide and the number of people to whom they will provide the services. Many states have long waiting lists for services. Although current institution residents are guaranteed a space in the community and are not placed on a waiting list, the existence of waiting lists for people who are not in institutions casts doubt on a state’s commitment to community living.
  • (page 35) When people with disabilities are disbursed widely in a community, as is desirable, specialized health care and dental services may not be available locally. In 49 states, Medicaid does not pay for routine dental care. Furthermore, many service providers are unwilling to accept Medicaid reimbursement, which they believe is inadequate, further limiting the availability of some practitioners. [emphasis added]
  • (page 47) In 2009, an estimated 122,000 people in the United States were on waiting lists for residential services. A state may modify the limit with permission from the Centers for Medicare and Medicaid Services (CMS).
  • (page 59) “Our system of community-based supports is not perfect. It remains underfunded, provider wages and training are inadequate, and we must improve client safety in the system. However, Oregonians with disabilities have some things today they didn’t have 30 years ago at Fairview: freedom, dignity and a sense of belonging.” Sara Geiser, Oregon State Representative and a member of the National Council on Disability
As the parent of two adult sons who function at the level of 6-12 month old infants, and live in a 6-bed group home, I know from experience  that parents often fill in gaps in services. We pay for our sons to attend an activity program 3 days per week, we bring them home for part of the day most weekends, and we monitor the group home and their medical care closely. For my older son, we pay $1,000 every time he gets his teeth cleaned, because he needs to be sedated and we have not found a dentist who is willing to do this and accept Medicaid payments. For a number of years my older son experienced the devastating effect of poorly trained staff, high staff turnover, poor management, and inadequate quality controls in his group home. For those who live in unlicensed smaller settings, people with severe disabilities often suffer from neglect and exploitation that results from a lack of supervision and sufficient oversight of the services they receive. We are fortunate that we can still oversee the care of our sons. Many other parents cannot and fear of the “system” that is supposed to care for their children is pervasive. 

Monday, February 4, 2013

News Coverage of debate over closure of institutions in Virginia

NCD Report on Deinstitutionalization: Part 2

“Two Key Truths….”

In its report on Deinstitutionalization, the National Council on Disability states that "two key truths” emerge as the underpinnings for the Americans with Disabilities Act, the 1999 Olmstead Supreme Court decision, and for the rationale to close institutions:

  1. People with ID/DD [Intellectual and Developmental Disabilities] have a legal right to live in the community and to receive necessary services and supports. 
  2. Life in the community provides opportunities for dignity, freedom, choice, and a sense of belonging that are not possible in an institutional environment.
The first “truth” is only half true. The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities. It requires state and local governments to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities”, but it does not define what an appropriate setting is for every person with a disability. Identifying needs and the appropriateness of settings can only be determined on an individual basis.

The Olmstead decision determined that unjustified institutionalization is discrimination. Transfer to a community placement from an institution is required only if the State’s treatment professionals have determined that community placement is appropriate, the individual affected does not oppose the transfer, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of other with mental disabilities.

In dismissing the idea that anyone needs an institutional placement, the NCD report (page 56) says that, “Some of those who oppose institutional closure claim that some people with ID/DD are so severely disabled that they cannot handle or benefit from community living and that institutions are the most integrated setting appropriate to their needs.” The whole truth is that those who oppose institutional closure include the Supreme Court Justices who stated in the Olmstead decision:

“We emphasize that nothing in the ADA 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.


“As already observed by the majority, the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘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" [quoting VOR’s Amici Curiae brief]

The second “truth”, that opportunities for dignity, freedom, choice, and a sense of belonging are not possible in an institutional environment, is an assertion that cannot be proved or disproved. It is based on the subjective experience of a wide range of individuals, many of whom are unable to comprehend such abstractions or express their opinion about them.

The underpinnings of the NCD interpretation of the Americans with Disabilities Act and the Olmstead decision are fragile to non-existent as is their rationale for wanting to close all institutions.

NCD Report on Deinstitutionalization: Part 1

From the NCD Web site: The National Council on Disability (NCD) is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Presidential appointees, an Executive Director appointed by the Chairman, and twelve, full-time professional staff.

The National Council on Disability issued a report in October 2012 called "Deinstitutionalization: Unfinished Business". The report is a companion paper to an NCD Deinstitutionalization Toolkit designed to provide a how-to manual for all those interested in institutional closures.

What's wrong with this picture? The National Council on Disability is a federally funded agency that is using federal money to mount a campaign to eliminate another federal program that NCD members don't like. 

Intermediate Care Facilities for people with developmental disabilities (ICF/DD) are funded and regulated by Medicaid. They are considered to be institutions under Medicaid law, along with nursing homes, mental hospitals, and other hospital settings. Some ICFs are larger facilities, but they may be as small as 4-bed state-operated group  homes. They house some of the most severely disabled adults, including people who are medically fragile or have behaviors that make them very difficult to care for in community settings.  ICFs/DD come with an array of services that are often not routinely available elsewhere (for instance, nursing services, dental care, and other specialities). Funding covers total care and is not fragmented the way it is in most community settings.

Residents of institutions have protections against abuse, neglect, and exploitation as well as the right to continue to receive institutional care, even if it conflicts with the ideology of advocacy organizations that don't want them to have this choice.

Although the NCD report emphasizes closing larger facilities, it arbitrarily (and without any specific authority to do so) redefines the word "institution" to include any setting that is "a facility of four or more people who did not choose to live together"(emphasis added). It appears the NCD is laying the groundwork for the elimination of a broad spectrum of living situations currently available to the DD population.

By calling for the closure of all larger facilities, the NCD misinforms the public on the intent of the Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision with regard to institutional care for people with severe disabilities. It places at risk people who are the most vulnerable and difficult to care for. 

More Information:

Link to the NCD report.

My comments on the NCD report.

Comments from VOR, a national organization that supports a full array of residential and service options for people with ID/DD.

Comments from a Massachusetts blog, "The National Council on Disability can’t be serious"

Send comments to the National Council on Disabilities at

Because the NCD is a federal agency with oversight by the U.S. Congress, send copies of you comments to President Obama, your U.S. Senators (Carl Levin and Debbie Stabenow in Michigan) and your U.S. Representative (find here)