Wednesday, October 16, 2019

VOR opposes legislation that will lead to the closure of employment programs for severely disabled

VOR (a Voice Of Reason) “is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities.” The organization is unique in supporting individuals who have severe and profound disabilities and their families, especially those who need an institutional level of care. Many of our I/DD family members live in Intermediate Care Facilities for people with I/DD (defined as institutions under Medicaid law) while others live with their families or in community homes. 

VOR is unusual, if not unique, as a national organization that does not receive or seek funding from the federal government. VOR is 100% privately funded and receives more than 95% of its financial support from families of individuals with intellectual and developmental disabilities (I/DD). [See The Value of VOR Membership]

As a member of VOR for more than fifteen years, I found a home here for a number of reasons, not the least of which is that I have two adult sons with profound I/DD. With VOR, I am not obliged to follow an ideology that claims that all people with disabilities can live independent lives in their communities, dismissing mention of people like my sons who will never be independent or able to make their own decisions or work in competitive, integrated employment. I do not subscribe to the idea that the quality of my sons’ lives should be measured primarily in terms of how many non-disabled people they come in contact with in their daily lives. This is, in fact, what many federally supported disability organizations are obliged to espouse if they want those federal dollars.

Because VOR relies entirely on the generosity of families and friends, much of the work is done by family “volunteers” (or “draftees”, as is often the case). From time to time, I republish policy statements, commentary, and personal stories from VOR, mostly because they are consistently accurate and well-written and represent voices from the heartland of disability politics that are rarely heard, people with severe and profound disabilities and their families.

The following is a statement of VOR’s opposition to federal bills that include in them the elimination of sub-minimum wage certificates that would lead to the closure of employment programs that serve people with severe disabilities. 


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Please Oppose the Movement to Eliminate 
Work Centers and 14(c) Wage Certificates for 
Individuals with Intellectual and Developmental Disabilities 

The Raise the Wage Act:
H.R. 582 – Rep. Bobby Scott (D-VA) S. 150 - Sen. Bernie Sanders (D-VT)

The Transformation to Competitive Employment Act:
H.R. 873 - Rep. Bobby Scott (D-VA) S. 260 – Sen. Bob Casey (D-PA) 


Thousands of individuals with intellectual disabilities enjoy the opportunity to work in a specialized environment that nurtures them and accommodates their mental, physical and behavioral challenges, while rewarding them with specialized wages that, while not equal to full minimum wages, are appropriate to their level of productivity and their capacity to work. These opportunities rely on specialized wage certificates as provided for under Section 14(c) of the Fair Labor Standards Act. The employment usually takes place at facility-based work centers, sometimes referred to as sheltered workshops. These centers provide more than employment. They provide a protected atmosphere suited to the intellectual and behavioral challenges of the individuals who work there. They cater to a higher-needs population, which includes people who may have frequent seizures, who may act out physically, even violently, when stressed, or who may need help toileting or to have their adult diaper changed. This is a specialized environment for a special population.

In the first weeks of the 116th Congress, two bills have been introduced in the House and Senate that would eliminate these employment opportunities for individuals with intellectual disabilities. Proponents of these bills describe them as civil rights issues, asking:

“If a non-disabled person has the right to work for competitive wages, why should a person with intellectual disabilities be denied the right to work for full, competitive wages?”

This appears to be a perfectly reasonable question, until you think of the different forms of disability, and the severity of some intellectual disabilities. Then the matter becomes complicated, as not all disabilities are equal. 


A more accurate question would be:

“If a non-disabled person has the right to work for competitive wages, why should a person  with intellectual disabilities who is capable of working at an equal capacity be denied the right to work for competitive wages? And why should a person who is not capable of working at a competitive capacity be denied the opportunity to perform any work at all?”

Why VOR opposes these bills:

The movement to promote competitive employment for disabled individuals, encompassing people with visual, auditory, and physical disabilities as well as many people with I/DD, is a noble effort, a true civil rights issue that is overdue. As a society, we should be creating opportunities for those who want to work, and who are capable of integrating into the mainstream and working at a competitive level. But the implications of these two bills echo the “one-size-fits-all” mentality that dominates the I/DD system and marginalizes those individuals who do not fit into the “one size” population. “One-size-ism” will never be appropriate disability policy. The I/DD population is too complex and diverse to be treated with simplistic, one-sized solutions.
Both of these bills are aimed at providing competitive, integrated employment opportunities for those capable of achieving this level of employment, but they also insist on eliminating the current opportunities provided for those not capable or not desiring this level of employment.

The thinking behind this movement is that work centers are bad things that limit the individual’s capacity, and that given the opportunity to work in a competitive, integrated environment, all individuals will rise to their full capacity. Proponents of this movement, when forced to admit that some people will be shut out or left behind, speak as though this is an “acceptable consequence” of their plan. It is not. These are human lives. These are not disposable, expendable individuals. These people have families who love them and want the best for them.


There is no reason to accept these “acceptable consequences”, especially when there is no correlation between eliminating 14(c) wage certificates and investing in employment opportunities for individuals with disabilities. 

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The Raise the Wage Act has passed the House of Representatives and was introduced in the Senate. The Transformation to Competitive Employment Act has been introduced in the House and Senate with no other actions taken.

More posts from the DD News Blog on this issue.

Thursday, October 10, 2019

Wrightslaw: Ann Arbor Special Education Conference, November 3, 2019

Wrightslaw has been providing information on special education law and policy since at least 1993. Their Website has tons of material on special education with links to original sources so that you can learn directly about the law. They include answers to frequently asked questions from parents. Their materials are not disability specific, which means that they connect you with the underlying principles that are the basis for the federal Individuals with Disabilities Act and anti-discrimination laws that apply to all children with disabilities.

That said, they do charge for conferences and sell books and training manuals on their Website. Other offerings are free and available by signing up or just following links.



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Wrightslaw Special Education conference in Ann Arbor:

Sunday, November 3, 2019 

10:30 am to 6:30 pm
at Kensington Court Hotel,
3500 S. State St., Ann Arbor, MI 48108

The ticket price is $150.00

Ticket includes: lunch, snack, a Wrightslaw highlighter pen and the three Wrightslaw books which retail for $62.85 - Wrightslaw: Special Education Law, 2nd Edition, Wrightslaw: From Emotions to Advocacy, 2nd Edition, and Wrightslaw: All About IEPs.

To register, go to WWW.DOWNSYNDROMESUPPORTTEAM.ORG/WRIGHTSLAW


Friday, October 4, 2019

Michigan hearings on Community Mental Health: House Appropriations Subcommittee on Health & Human Services

Michigan State Representative Mary Whiteford, Chair of the MI House Appropriations Subcommittee on Health and Human Services, has announced a series of hearings on Behavioral Health, Community Mental Health Redesign, and Behavioral Health Integration. These are scheduled for Wednesday mornings, from October 2, 2019 through November 6, 2019: 

10:30 A.M. - 12 P.M.
Room 352
House Appropriations
State Capitol Building


Note that two hearings to receive public input will be held on October 30 and November 6, 2019. Call Mary Whiteford's office at (517) 373-0836 or email MaryWhiteford@house.mi.gov for more information (how much time will you have to testify, what is the signup procedure to register, how will written testimony be handled, etc. ???).

To watch a video recording of the 10/2/19 hearing, go to Video Archives for the MI House of Representatives, scroll down to "Appropriations Health and Human Services - Wednesday, October 02, 2019" and click on "Play Video". Presumably future hearings will also appear here after they have been held.

Here is the full schedule:


House Appropriations Subcommittee on HHS

Wednesday, Oct. 2


History and Overview of Public Behavioral Health Financing in Michigan
Jeff Patton - Kalamazoo CMH CEO
Jim Haveman - Former Director of Dept. of Community Health

Wednesday, October 16

CMH Perspective Benefits and challenges of the CMH, PIHP system including House fiscal analysis of Michigan’s behavioral health carve out
Bob Sheehan/Alan Bolter - Community Mental Health Association of Michigan (CMHAM)
House Fiscal Agency


Wednesday, October 23 

The case for Behavioral Health Integration from the former Medicaid Director of Arizona 
Thomas Betlach - former Arizona Medicaid Director

Wednesday, October 30
Public Input

Wednesday, November 6
Public Input

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The Michigan Community Mental Health system serves people with developmental disabilities, mental illness, substance abuse disorders  and children with emotional disturbances. People with DD are a small proportion of the total population served, but DD services represent a proportionately larger part of the CMH budget. This is largely due to the need by many with DD for up to 24/7 home or residential care, the complications of complex medical and behavioral needs, and needed support for families. 

It is often the case, that people with developmental disabilities receive less attention than they should by state legislators, so make sure your voice is heard. 


Thursday, October 3, 2019

Bad News/Good News in Michigan’s budget wars

October 1st was the beginning of the 2020 fiscal year in Michigan, which meant that at least 16 different budget bills had to be approved to avoid a government shutdown. The intransigence of the legislature and the Governor’s office in finding a way to iron out entrenched differences was resolved by Governor Whitmer. She used the line item veto to achieve a balanced budget and a maneuver used by former Governor John Engler in the 1990’s to shift money around within departments. Governor Whitmer issued 147 line item vetoes totaling $947 million as a way to restart negotiations with the Republican legislature.

According to an email from DDAdvocates of Western Michigan,

“The bad news is that our Governor has vetoed $1 Billion in budget items. The good news is that Sec 298 was one of the items in the $80 Million MDHHS budget cuts. Presumably, a period of negotiations with the Legislature will commence; this is an opportunity to communicate with your Legislators about the need to delete the 298 funding permanently.”

Section 298” has been a controversial section of state law that promotes the privatization of community mental health behavioral services, including the social services that allow people with disabilities to live safely in community settings. Medicaid funding that is now administered by local Community Mental Health agencies would be handed over to Medicaid Health Plans that manage the medical side of Medicaid but have little experience in providing residential and other services needed by people with disabilities.

I assume that all local and regional newspapers will be covering this in detail. 
Here is a summary of the main issues from "Bridge, Michigan's non-partisan, nonprofit news source".


Monday, September 30, 2019

Pennsylvania legislators propose a moratorium on the closing of two state facilities for people with intellectual disabilities

Residents and families of two Pennsylvania state-operated ICFs/IID will get a reprieve from closure. See blog post on the decision to close White Haven and Polk Centers.

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House Co-Sponsorship Memoranda

House of Representatives

Session of 2019 - 2020 Regular Session

MEMORANDUM

Posted:September 25, 2019 11:22 AM
From:Representative Gerald J. Mullery and Rep. Tarah ToohilRep. R. Lee James
To:All House members
Subject:Moratorium on Closing of White Haven and Polk State Centers
Fear of the unknown can be deeply debilitating and a feeling with which we are all familiar. Today, hundreds of families across this Commonwealth are grappling with the fear of their loved one being forced from the place they have called home for a large portion of their life. For others, they are struggling to find an alternative facility that will match the immense needs of their family member before time runs out.

We support the integration of those living with intellectual disabilities into the community where they can thrive and become more independent. But for the residents of the White Haven and Polk State Centers, that is simply not a compassionate option. Many of these individuals require 24/7 attention and extensive medical care morning and night. Closing these facilities forces families to make excruciatingly difficult emotional and financial decisions for individuals whom we have vowed to protect.

For some of these residents, the closure and forced exit could be incredibly damaging and traumatic. Before we uproot the lives of these vulnerable Pennsylvanians, we must truly understand the impact the decision may have on the remaining time they have and make readily available the resources to seamlessly continue care. That is why we are taking swift action to introduce legislation that would enact a moratorium on the closing of these facilities until we are better prepared as a state to respond to the impending result.

Please join us in supporting this legislation and this critical decision to buy more time for the residents of White Haven and Polk and their families.

PA Governor announces final decision to close two of four state operated facilities for people with IID without consulting residents, families, or state legislators

Polly on hiatus

After a long hiatus from The DD News Blog, I am picking up where I left off with Susan Jennings' compelling testimony before the federal Interagency Autism Coordinating Committee on July 23, 2019. 

Susan Jennings' severely autistic son suffered for years in abusive community care, often in a toxic over-medicated state, until the Jennings went to court and gained admission for their son to an Intermediate Care Facility for individuals with intellectual disabilities (ICF/IID). White Haven Center in Luzerne County, Pennsylvania, has the right combination of services to control his maladaptive behaviors and a setting that provides close supervision and the safety he needs to thrive. [See "Joey's Journey" for a full account of the ordeal that led to White Haven Center]

Three weeks later,  according to an AP report on August 14, 2019, the Pennsylvania  Department of Human Services (DHS) announced plans to close two of the remaining four state centers for individuals with intellectual disabilities, including Joey's home at White Haven Center: 

"The Department of Human Services said Tuesday that public meetings will be held next month to gather comment on the plans to close the Polk State Center in Venango County in western Pennsylvania and the White Haven State Center in northeastern Pennsylvania's Luzerne County"

The DHS declared that the decision to close these two facilities is final, but also admitted at a legislative hearing on 9/24/19 that the decision was arrived at without consultation with residents, families, facility staff, or legislators. 

The Pennsylvania DHS, according to the AP account, "....promised to work with residents and families, meet with potential community service providers and come up with 'individualized transition plans.' Officials said every Hamburg center [which closed in 2018] staff member who expressed interest in continued work for the state was offered a job prior to closure or in the one-year contractual placement period afterward." 

Residents and families, however, have the option of choosing to continue to receive ICF care if they disagree with the decision to move residents to community placements. This is a holding of the 1999 Supreme Court Olmstead decision that states that a person in institutional care may be moved to community care as long as the affected individual does not oppose treatment in the community. This stipulation is largely ignored by state agencies and advocacy groups who ideologically oppose institutions and tout the overwhelming success of community placements for people with IID. 

According to the Pittsburgh Post Gazette, 8/14/19, Peri Jude Radecic, CEO of Disability Rights Pennsylvania (Pennsylvania's Protection and Advocacy agency) approves of the facility closures and states that, “The Americans with Disabilities Act sought to end the isolation and segregation of persons with disabilities. Court decisions have affirmed the right to move and live in the community. For decades, our Commonwealth has demonstrated that state operated institutions can close and individuals can be moved into the community thoughtfully and safely.”  The Pennsylvania ARC has also expressed enthusiasm for these closures.

For a more accurate interpretation of the ADA according to the 1999 Olmstead decision, VOR has put together passages from Olmstead protecting choice with this introduction:

"...There is no inclusion mandate in Olmstead. Rather, the Court’s determination in Olmstead supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual. Olmstead guarantees choice for all
individuals, their parents, and guardians. Olmstead requires that those who are moved from institutional care to smaller, community-based group homes meet three distinct criteria to determine the appropriate residential setting. There is no mandate to deny access to institutions, to close institutions, nor to place at risk any individuals who need and choose institutional care."

The views of residents and families and others supporting Pennsylvania state facilities are expressed here, on the KIIDS website, ("Keeping Individuals with Intellectual Disabilities Safe...") and at a legislative hearing on "Open the Doors to Dignity" held on April 30, 2019.

The legislative hearing held on 9/24/19 included both support and opposition to the closing of state facilities. Highlights include testimony from John Hirschauer at 1:06 followed by Susan Jennings (White Haven), Irene McCabe (Polk Center), and Hugo Dwyer from VOR from 1:17 to 1:45.

Other interesting moments: 

There were numerous references in the DHS testimony to the amazing success of the closure of Hamburg Center last year. According to a report on the hearing from the Standard-Speaker, Hazelton, PA, 9/25/19, Celia Feinstein from the Institute on Disabilities at Temple University was one of only two witnesses from outside the DHS to testify in support of closure of the state facilities. She said Pennsylvania lags behind other states in moving people out of centers.

"She also said Temple followed people after they left the state Pennhurst Hospital that closed 32 years ago to find out if the move benefited them.


"'After many years of study, I can answer with a resounding 'yes,' Feinstein said. 'In every way we were able to measure it, people are better off.'"

Others were more concerned about the possibility of less than adequate care that residents might receive in community settings and were focused on the fact that of the 80 people moved from Hamburg Center that closed in 2018, 15 have died

One rationale given by DHS for not having consulted with residents, families, facility staff, or legislators before deciding to close two centers was that when the DHS floated the idea of closing Hamburg Center, it spooked workers into quitting and leaving residents insufficiently cared for. Apparently it has not dawned on the DHS that this could happen again, now that the centers that they want to close have been identified. To have care deteriorate as a center is closing is a familiar pattern that has been observed before. It has even been used as an impetus to families to move quickly in selecting a community provider, before all the "good ones" are taken.

There are 13,000 people on waiting lists in Pennsylvania for community services. Hugo Dwyer from VOR pointed out that people coming out of state facilities will be first in line to receive Medicaid Waivers to fund community services, thereby putting more strain on the system to serve people in community settings. According to the UCP Case for Inclusion 2019, page 9, although spending doubled on Home and Community based services from 2006 to 2016 and the number of people living in larger state institutions was cut in half, waiting lists for services tripled.

How have people with IID fared in other states when facilities closed?

Michigan closed its last state-operated ICF in 2009. The promise of appropriate care for everyone with a developmental disability in a community setting has not been fulfilled. "Michigan’s mental health system is failing many with severe autism" gives several examples of how people with severe autism who might have been better served in an ICF/IID are falling through the cracks and facing institutionalization in jails and psychiatric hospitals.

Georgia: The Augusta Chronicle has been following the tragic consequences of forcing people with developmental disabilities and mental illness out of institutions and into communities that are not prepared for them and are unable to meet their needs. "Report: Deaths, lack of housing plague Georgia system for disabled, mentally ill" by Tom Corwin, 8/26/19, relates how "An independent reviewer found that despite Georgia’s claims of compliance, a state health care system for the developmentally disabled and mentally ill is still inadequate." 

In 2010, Georgia reached a settlement with the U.S. Department of Justice to move residents of state facilities to community settings. According to the article, 

"An Augusta Chronicle investigation in 2015 found nearly 1,000 deaths among those patients in community care in both 2013 and 2014, and the state has twice halted moving them from state hospitals into community care over the lack of adequate care among those providers. In its last Annual Mortality Review that covered fiscal year 2017, Jones [the independent reviewer] noted that the death rate has continued to climb each year, from 12.5 per 1,000 in fiscal year 2015 to 16.4 per 1,000 in 2017.

“'Perhaps most significantly,' Jones notes, the death rate for those the state has already identified as high risk is anywhere from twice to four times as high."


Washington State: from Because We Care -- Beyond Inclusion 
in a series of Blog posts - "Stuck in the Hospital"


In Pennsylvania, there is bipartisan support from legislators, especially those from the affected counties, to have the state legislature review the decision by DHS to close two of its state-operated centers.

See also full coverage of the PA legislative hearing from the Standard-Speaker from Hazelton, PA:  "Advocates, Opponents Of White Haven Center Closing Head To Harrisburg For Hearing", 9/25/19.

Saturday, July 27, 2019

From the Interagency Autism Coordinating Committee on Autism Housing Needs, 7/23/19


This is from an account of the Interagency Autism Coordinating Committee meeting on 7/23/19 by Jill Escher: 


Susan Jennings, founder of Keeping Individuals with Intellectual Disability Safe (KIIDS) shared an oral public comment that her son is one of those who kicks down doors and elopes into traffic. He has been discharged from six different group homes, as none could manage his challenging behaviors. She cited systemic shortcomings to community group home, including severe abuse and toxic over-medication. His salvation was an ICF, and she laughed at the idea of “forced institutionalization” since “You can’t force your way” into an ICF since “they are closed or closing.”

She said her son is far from an anomaly. About 40% of the autism population exhibits severe challenging behavior. Because of the lack of options, these adults often languish in psychiatric facilities, hospitals, or jails. The Olmstead Supreme Court decision recognizes that the ADA does not impel states to close institutions, and indeed that some individuals may need these setting for crisis periods or permanently. They must remain available, as they offer a superior form of care for a segment of the population, she said. There are very high costs to keep some adults “in the community” with too little assistance and supervision. “The state center is a bargain compared to the community,” and also provides her son a much greater degree of personal freedom. Also, unlike community settings, ICFs must meet rigorous standards to be certified. She drew attention to the direct service provider (DSP) shortage: “You are asking people to handle life-and-death emergencies at fast-food wages.” Finally she denounced the “cruel movement afoot” to defund out-of-home options. If parents do not have the ability to care for severely affected adults — who does? We must offer a full range of services.