Tom Dwyer's message to the President's Committee for People with Intellectual Disabilities

Hugo Dwyer is the Executive Director of VOR, a "Voice Of Reason speaking out  for people with intellectual and developmental disabilities". He traveled to Washington, D.C. in November to deliver a birthday message about his brother Tom, a resident of Southbury Training School in Connecticut, an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID). This appeared in the Winter 2018 edition of the VOR Voice.

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Executive Director’s Message: Tom Dwyer Speaks to The President 

My brother Tom turned 62 on November 8th of this year. He lives at the Southbury Training School, a state-operated ICF in Connecticut. STS has been Tom's home for his entire adult life, and I can honestly say that I don't believe Tom would be alive today without the quality care, love, and community that STS has given him.

Tom probably doesn’t know what a birthday is. He is severely developmentally disabled. Tom has autism, bi-polar disorder, Pica, Parkinsonism, and what was once called profound mental retardation. He has one detached retina and his vision is poor. He uses a wheelchair but he can be walked with a gait belt. And Tom is non-verbal.

I did not go to Connecticut to bring him his birthday present that day. Instead, I took a train down to Washington, D. C. to give him his gift. I went to Washington, D. C. to give Tom a voice.

I attended a meeting of the President’s Committee for People with Intellectual Disabilities (PCPID), hosted by the Administration for Community Living (ACL). I addressed the committee on behalf of Tom and on behalf of all of our loved ones with severe/profound intellectual and developmental disabilities. My voice, Tom’s voice, your voice, was the only voice that spoke on behalf of the most severely impacted members of the I/DD Community.

No one told me that the public wasn’t allowed to address the Committee at this meeting. Fortunately, no one had told the first speaker that either. When the Liaison from the Office of Health and Human Services to the Office of the President finished his opening remarks, centered around the committee’s intent to speak about Competitive Integrated Employment, he asked if there were any questions. I put up my hand, and not knowing any better, he picked me.

I introduced myself to the committee, and told them about Tom, that it was his birthday and I was there to speak for him, and for our VOR families with loved ones who need and want services in Intermediate Care Facilities (ICFs). I told them that our families have been marginalized and overlooked for decades, our preferred services closed down or cut back, that admissions to ICF’s have been closed in many states, including at STS. I told them that we were being denied our right to choice, and that as parents and siblings and guardians, we had the right to make these choices. I went on to say that many other individuals with intellectual disabilities are being denied the opportunity to work in center-based employment with specialized wages. The choice of sheltered work environments is being denied by people who see this as detrimental to the wishes of those who seek competitive employment. I told them that our voices have not been heard in their meetings, and that I was there in hopes that the more severely intellectually disabled populations would have a seat at the table at the President’s Committee for People with Intellectual Disabilities.

After I spoke, the committee announced that members of the public were not to be granted the opportunity to speak at this meeting. Except for two women who had been hired as ASL interpreters if needed, I was the only person attending as a member of the public. But I stayed and watched and introduced myself to individual members when on breaks. I made sure the members of the committee were very aware of who I was and who I was there to represent.

The President’s Committee appears to have already set their agenda. It will focus on the less severely impacted members of the community, their hopes for inclusion, for integrated competitive employment, even for attending college. These are all noble, admirable goals. We all want all of these things for all of these individuals and their families. Inclusion is fine, but we want our loved ones to be included, too. A report to the President of the United States about the community of people with intellectual disabilities is not complete if it excludes the most severely intellectually disabled.

I hope that the Committee did hear Tom’s voice that day, and that they will see fit to invite our families to be part of their discussions next year. And I hope that maybe someday, Tom’s voice will be heard by the President himself. Or herself, if it takes that long.

Hugo Dwyer

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See also, 

"Disability Housing: Institutional Avoidance" by Micaela Connery, The Huffington Post, 12/6/17: "Institutions aren’t a failure of the past, they’re a reality of the present."

Southbury Home and School Association

The Right to Fail

VOR, "a Voice Of Reason", comments on a National Council on Disability report on guardianship, Part 2

The National Council on Disability (NCD) Report, "Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”, is over 200 pages long and contains historical as well as current information on guardianship. To simplify and focus VOR's response, VOR comments on the seven findings from the report.

The NCD admits from the outset that there is a lack of reliable and comprehensive data on guardianship that makes it impossible to know for sure whether systemic reforms are necessary. This caveat, however, does not prevent the NCD from making recommendations for reform. Part 3 of The DD News Blog comments on the report will cover more information about the NCD and the philosophical underpinnings of the movement to replace guardianship with Supported Decision Making and other alternatives.

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VOR Comments on the Seven Findings of “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities” 

Finding 1: There is a lack of data on existing guardianships and newly filed guardianship. 

VOR agrees with this finding and the recommendation to “develop initiatives to produce effective and comprehensive data on guardianship”. We recommend that data should also be collected on the welfare of persons who have been removed from the protections of court-ordered guardianship. 

This finding supports a conclusion that without more reliable and complete data on guardianship, it is not possible to determine whether systemic reforms are needed. Evidence is also lacking that would support the limiting of guardianship or the wholesale replacement of guardianship with Supported Decision-Making or similar alternatives. 

Finding 2: People with disabilities are widely (and erroneously) seen as less capable of making autonomous decisions… 

VOR disagrees with the above statement, especially the word, “erroneously”. It may be true that some people with disabilities are incorrectly assumed to be unable to make autonomous decisions. Others, especially those with profound and severe intellectual disabilities and other complex medical and behavioral conditions, are indeed incapable of making decisions for themselves in some or all aspects of their lives. When necessary, they should be afforded the due process protections of guardianship to assure that their interests and rights are protected. 

In recommending that the DOJ [U.S. Department of Justice] should issue guidance to states on their legal obligations under the ADA [Americans with Disabilities Act] in regards to guardianship, it is not clear what the NCD has in mind or how much control the federal DOJ has over state court-appointed guardianships. Unfortunately, the ADA and the 1999 Supreme Court Olmstead decision interpreting the federal anti-discrimination law have been widely misinterpreted to require that services be provided in the “community”. They have been incorrectly used to limit the choices and range of services available to people with I/DD. 

Guardianship may be inappropriate for some people with disabilities, but a finding that an individual lacks the capacity to make informed decisions and needs the protection of guardianship is not in itself discrimination. 

Olmstead does not address guardianship or other forms of surrogate decision-making. The 2014 Home and Community-Based Settings Rule, however, confirms the authority of state courts to appoint guardians to represent people with disabilities: “We note that where a legal guardian, conservator, or other person has the sole authority under state law to make decisions related to the individual’s care, the state must comply with the decisions of the legal surrogate.” [p. 2995 of the Federal Register of 1/16/2014; Definition of Individual’s Representative] [emphasis added]. 

The recommendation that DD Councils, Universities of Excellence in Developmental Disabilities, and Protection and Advocacy organizations should work to avoid guardianship ignores the recognition of individual needs, including the possible need for court appointed guardianship. 

Finding 3: People with disabilities are often denied due process in guardianship proceedings. 

VOR believes that the vast majority of Probate Courts and state guardianship laws assure due process when properly enforced. We would appreciate any information on courts that do not adhere to this standard. 

Finding 4: Capacity determinations often lack a sufficient scientific or evidentiary basis. 

VOR believes that this finding is a broad generalization and is not accurate. Requests for guardianship usually include statements from qualified physicians along with other information on the functioning abilities of the individual and recommendations on the need for guardianship. Recommendations and observations by parents and other family caregivers as to the functioning abilities of the individual should be included in assessments for guardianship. 

Finding 5: Guardianship is considered protective, but courts often fail to protect individuals. 

VOR believes this statement is overly broad and subjective. Most states require reports from guardians on the condition of the person under guardianship, and many require additional oversight of guardianship cases. 

We agree with the recommendation for appropriate levels of oversight and regulation of professional and public guardians. 

Finding 6: Most state statutes require consideration of less-restrictive alternatives, but courts and others in the guardianship system often do little to enforce this requirement. 

VOR believes that for people who can make decisions for themselves, less restrictive alternatives to guardianship should be available, based on the needs and desires of the individual. The recommendation to “use SDM [Supported Decision-Making] and the court systems to restore people’s rights”, even for people with severe intellectual disabilities, is questionable. Restoration of rights must consider the capacity of the individual to make decisions in some or all aspects of the person’s life and whether guardianship is needed to ensure a person’s safety, health, and general well-being. SDM has not been proven to be an effective method to replace guardianship and could instead place the person in harm’s ways. 

Finding 7: Every state has a process for restoration, but this process is rarely used and can be complex, confusing, and cost-prohibitive. 

VOR believes that this finding may or may not be true, given that, “Data on restorations is seriously lacking, making it impossible to tell how many individuals are in unnecessary guardianship…”[page 167 of the Report]. There must be recognition that ending guardianship for some people may be fraught with unintended and harmful consequences. For an individual who has undergone rigorous assessments on his/her ability to make decisions, and has been found unable to do so, assessments would either have to show that the initial assessment was incorrect or that changes in the person’s decision-making abilities no longer support a need for guardianship. 

For the most part, the federal Protection and Advocacy system opposes guardianship on an ideological basis rather than following its mandate to consider and protect the rights of individuals with developmental disabilities. We believe that to encourage P&A organizations to continue on this path with extra funding to remove individuals from guardianship would be a poor use of federal funds.

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VOR Comments Part 1

Olmstead Resources

Celebrating the 17th Anniversiary of the Olmstead Decision: Opportunities and Choices

Guardianship vs. Supported Decision Making

Free-For-All in the Lame Duck Session of the Michigan Legislature

Brian Dickerson sums up what is coming to fruition this week in the Michigan legislature:

It's the holiday tradition Lansing observes every other December: 

• Lock 148 elected representatives in a couple of large rooms.

• Remind those assembled that more than a third of them will be out of their jobs in 30 days.

• Sit back and enjoy the fun as dozens of lawmakers with nothing left to lose take the $57-billion-a-year enterprise called the State of Michigan for one last, wild spin around the block.

What could possibly go wrong? 

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The Lame Duck session of the legislature is the period between the November midterm election and the end of the old term. The Lame Duck is expected to last either through December 13 or December 20, 2018. The new term begins on January 1, 2019.

Here are two articles from the Detroit Free Press addressing the Lame Duck free-for-all:

"Michigan GOP guts minimum wage, paid sick leave bills in final passage" by  Kathleen Gray and Carol Thompson, Detroit Free Press, Published Dec. 4, 2018 and 

"The most controversial bills in Michigan's lame duck legislature" by  Paul Egan and Kathleen Gray, Detroit Free Press, Published Dec. 4, 2018

After eight years of complete Republican control, the Democrats won state wide elections for Governor, Attorney General, and Secretary of State and gained a few seats in both houses of the legislature. Three ballot initiatives also passed that won by wide margins, but are under fire by the Republicans who are trying to water down the laws while they have the super majority in the house and senate needed to change these proposals.

Here are a few of the most controversial bills going quickly through the legislature:

Minimum wage and sick leave

A ballot initiative to raise the minimum wage and require sick leave for employees had gathered hundreds of thousands of signatures and was going to be placed on the 2018 ballot. In September, the minimum wage and sick leave law was passed by the legislature with the intent to amend it during the lame duck session, when it would only require a majority of votes; A 2/3’s majority is required in most cases to change a law passed by the voters.

“Senate bill 1171: The bill would raise the minimum wage from $9.25 currently to $12.05 per hour by 2030 and take away cost-of-living adjustments. It also would raise the hourly wage for tipped workers, such as bartenders and waiters, from $3.52 to $4.58 per hour by 2030. If tips don't bring their wages to $12 per hour, the employer must make up the difference. The bill departs from the minimum-wage proposal included in citizen-initiated legislation, which would have raised the wage to $12 per hour by 2022, hiked the wage for tipped workers to $12 per hour by 2024, and tied the wages to the cost-of-living index…"

“Sen. David Hildenbrand, R-Lowell, sponsored the minimum-wage bill and said that he doesn’t believe in government-mandated wages.”

“State Rep. Abdullah Hammoud, D-Dearborn, offered amendments that would make members of the Legislature and state officials abide by the same pay and sick leave rules in the two bills, but they were voted down.

“‘You’ve gutted the original language and usurped the will of the people,’ said Hammoud, graphically comparing the changes in the bills to how a fish is gutted."

Senate bill 1175 waters down paid sick leave requirements

Michigan voter access

“Senate bills 1238-1240: Would alter the Promote the Vote ballot proposal passed by voters by 67-33 percent, tweaking a provision that allows a person to register to vote up to the day of the election to add more proof of residency in the 14 days before the election. The bills also would require a designation of U.S. citizenship on drivers’ licenses and state identification cards before a person could automatically be registered to vote and would allow people to opt out of registering to vote when they get their state identifications.”

Anti-gerrymandering

“Senate bill 1254: Would alter the Voters Not Politicians constitutional amendment ballot proposal, which voters passed by 61-39 percent to change the way state and federal legislative district lines are drawn, to impose a $500 fine for people who want to become a member of the 13-person redistricting commission if they mischaracterize their political affiliation and prohibit a person affiliated with any political party to provide consulting services to the commission. Republican lawmakers characterize the changes as legislation to implement the new redistricting method — which takes the drawing of district lines out of the hands of the Legislature. Those who backed the Voters Not Politicians plan say lawmakers shouldn't be interfering with the plan voters approved.”

Shifting Oversight of the campaign finance law

"Senate Bill 1252: The bill would shift oversight of campaign finance law from the secretary of state to a six-person bipartisan commission appointed by the governor. The move comes as Democrat Jocelyn Benson is about to replace Republican Ruth Johnson as Michigan's secretary of state."

[A commission split 50-50 between Democrats and Republicans would likely lead to a stalemate and stall or prevent changes being made that a large majority voted for.]

More influence for Legislature in court cases

“House Bill 6553: The bill would allow the state House of Representatives and Senate to intervene in any legal proceedings involving the state, which has traditionally been the purview of the state attorney general or the governor’s office. The move comes as Democrats are about to replace Republicans in both the governor and attorney general offices, while both chambers of the Legislature remain in GOP control."

Restricting powers on newly elected Secretary of State and Attorney General

“Senate Bill 1176: The bill would bar state agencies, including the attorney general's office and the secretary of state's office, from requiring nonprofits, which are frequently used to pay for political "issue ads," to disclose information about donors, volunteers or members. The bill would also restrict the powers of the Attorney General's Office in investigating fraudulent charities that scam the public.”

GOP senators cash in

"Senate Bill 1022: The bill would allow senators who earlier ran for the House to transfer surplus funds from their Senate campaign committees to their inactive and cash-poor House committees, in order to pay off old debts.The bill would allow two outgoing state senators — Jack Brandenburg, R-Harrison Township, and Jim Marleau, R-Lake Orion, to pocket more than $92,000, by using surplus Senate funds to reimburse loans each of them made to their House committees." 

If you check the links for these bills, you should be able to find out their status. Eventually, they will all have to be signed by Governor Snyder to become law.

Contact information for Governor Rick Snyder.

VOR, "a Voice Of Reason", comments on a National Council on Disability report on guardianship, Part 1

In March 2018, the National Council on Disability (NCD) published a more than 200-page report called “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”. The NCD promotes Supported Decision Making (SDM) and other alternatives as a replacement for court-ordered guardianship and includes recommendations for increased funding for advocacy of SDM. 

A VOR committee has read and analyzed the report and sent comments to the NCD. Overall, the report adds to the recent onslaught by some federal agencies and advocacy organizations against guardianship (including family guardians) that tends to dismiss the reality of people with intellectual and developmental disabilities who are unable to make decisions for themselves, in whole or in part. For these individuals the goal of self-determination, as that term is generally understood, is largely unattainable. 

VOR, "a Voice Of Reason", represents primarily individuals with severe and profound intellectual disabilities and their families and guardians. VOR advocates that the final determination of what is appropriate depends on the unique abilities and needs of the individual and the desires of the family and guardians for people who cannot make decisions for themselves.

This is the cover letter for the comments on the specific recommendations in the NCD report:

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November 4, 2018 

National Council on Disability (NCD)
1331 F Street, NW, Suite 850
Washington, DC 20004

Re: NCD Report, March 22, 2018, “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”

To: Neil Romano, Chairman, Lisa Grubb, Executive Director

For 35 years, VOR has advocated for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD). Our membership is mostly comprised of families of individuals with severe or profound intellectual disabilities, often complicated by significant medical, psychological, or behavioral conditions. Many of our loved ones are non-verbal or non-ambulatory. Many engage in self-injuring behaviors. They often require 24/7 care, provided by well-trained and caring direct support professionals. Our family members constitute a minority within a minority. They represent about 5% of the entire population of individuals with I/DD. The home and community-based settings that work for many people with I/DD often fail to meet the needs of these severely disabled, vulnerable individuals.

VOR has reviewed the March 22, 2018 report “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination”. The consideration of current guardianship law is an important issue upon which to focus. Any recommendations for changes in guardianship policy, however, should recognize that alternatives to court appointed guardianships, even with maximum assistance, are not feasible for everyone. This applies especially to the individuals and their families and friends who we represent.
As stated in the report, 75% of guardians are family members or personal friends. They are the most motivated and in the best position to advocate for the optimum outcome from the decision making process to promote the overall welfare and dignity of the person.

As guardianship alternatives are explored, it is imperative that court appointed guardianship remain an option for those who want or need it. Recognition of the varying needs of different populations who may be subject to guardianship, including people with profound and severe intellectual disabilities, will help ensure that any proposed change to guardianship law gives the appropriate assistance to each person based on individual need.

We welcome your response to our comments and urge you to take them into consideration in NCD deliberations on this important issue.

Sincerely,

Hugo Dwyer
Executive Director, VOR

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VOR Comments Part 2

See also, Guardianship vs. Supported Decision Making

Michigan: Law affecting minimum wage and sick leave is undermined by lame duck legislature

December 3, 2018

What the legislature giveth, the Lame Ducks taketh away...

The Michigan Community Mental Health system that provides services to people with developmental and other disabilities is in a crisis caused in part by the low wages of direct service professionals who provide care to people with disabilities. Whether an individual lives in a licensed setting or unlicensed home of their own or shares a home with others or with their family, the help they need to survive is often provided by a caregiver paid for by Medicaid.

Before the November 2018 election, hundreds of thousands of signatures were gathered to support a ballot initiative that would raise the state’s minimum wage to $12/hour by 2022 and allow employees to accumulate sick leave of 1 hour for every 30 days worked. The ballot initiative proved to be extremely popular which prompted the legislature to pass a law that would do exactly what the ballot initiative would do, but with the intention of amending the law during the lame duck session to scale way back on its requirements. This is exactly what happened. A bill scaling back the promises of the ballot initiative has passed the Michigan Senate and is now in the Michigan House of Representatives.

According to the Community Mental Health Association of Michigan (CMHAM) and other state organizations, a wage increase above minimum wage for direct care workers is needed to stabilize the work force that now has a 37% turnover rate. The difficulty and responsibility of the jobs these workers perform should be recognized and supported with better pay and working conditions.

Further complicating the CMH crisis is the necessity for the legislature to assure adequate Medicaid funding to pay workers to provide the services needed for people with disabilities. An increase in the minimum wage overall should bring an upward pressure to raise wages for direct care workers and to acknowledge the importance of adequate Medicaid funding to provide services. 

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More on the need to raise direct care workers wages above minimum wage...

See also, "Michigan state senators on Wednesday dramatically scaled back two citizen-backed laws to raise the minimum wage and require paid sick leave."

And furthermore, this is from a Detroit Free Press column by Brian Dickerson on  12/2/18: 

• Lock 148 elected representatives in a couple of large rooms.
• Remind those assembled that more than a third of them will be out of their jobs in 30 days.
• Sit back and enjoy the fun as dozens of lawmakers with nothing left to lose take the $57-billion-a-year enterprise called the State of Michigan for one last, wild spin around the block.

"What could possibly go wrong?"