The DRO Blog
Jan 23, 2014
Filed on January 25, 2012, the case asserts the right of 2700 Oregonians with I/DD who are segregated in sheltered workshops to choose employment services in the most appropriate integrated setting.
This Saturday marks two years since the filing of the Lane v. Kitzhaber case.
The lawsuit was brought on behalf of 2700 individuals with intellectual disabilities who receive services in sheltered workshops who have not been offered a real opportunity to choose integrated, supported employment services in the community.
Those individuals are asserting their right under the "integration mandate" of the ADA to choose employment services in the least segregated, appropriate setting.
It asks the court to declare that the state is violating the ADA and Rehabilitation Act by their needless segregation of class members in sheltered workshops and failing to provide them supported employment services for which they are eligible. It also seeks an order requiring the state to provide supported employment services to all qualified class members, consistent with their individual needs.
Fifteen months after the case was filed, Governor Kitzhaber issued an Executive Order that directs state agencies to take steps to achieve “integrated employment for individuals with intellectual and developmental disabilities, consistent with their abilities and choices…” While the Order has a positive goal, it makes no promises to individuals in sheltered workshops that their rights will be honored.
The Executive Order has:
• No clear definition of supported employment
• No required minimum hours of integrated work
• No required minimum wage
• No required community integration
• No required service availability
• No required schedule of implementation
• No required effectiveness in job placement
• No required funding
There has been confusion among some in the I/DD community about what the case is seeking and how it differs from other changes driven by the Executive Order, Medicaid, rate restructuring and legislative funding. Some go so far as to mistakenly claim that the intent of Lane v. Kitzhaber is to deny choice of services to individuals with I/DD. In fact, the case was filed because individuals with I/DD have been denied the meaningful choice of employment services in Oregon for years.
Lane v. Kitzhaber does not ask for an order that sheltered workshops be closed or that individuals be denied funding or supports. It does ask that the right of individuals to receive employment services in the most appropriate integrated setting be honored by the state.
Trial of the case is now scheduled for July, 2015.
Dec 17, 2013
People with mental illness are the latest target for a Congressman who wants to defund advocacy services and peer services and replace them with forced treatment. For almost 30 years, DRO has fought for better hospital care and more community services. Let your member of Congress know why the voice of service recipients should not be silenced.
DRO is a strong voice for the rights and safety of Oregonians with mental health diagnoses. For 27 years, thanks to funding from the federal PAIMI Act, we have worked closely with consumer/survivor/ex-patient groups and individuals, advocacy groups such as NAMI, MHAO, OFSN and others, to promote safe and effective inpatient services and quality community mental health supports and services. DRO has stood up to communities that have wanted to exclude people with mental health backgrounds from their neighborhoods. We have fought for improved community placements, adequate services in jails and prisons, humane police practices, timely crisis services, expanded services for children and families, and much more.
I am saddened to report that at least one member of Congress wants to silence our voice. Rep. Tim Murphy of Pennsylvania as introduced a bill that would slash DRO’s PAIMI funding by 85%. The bill is ironically called “The Helping Families in Mental Health Crisis Act” or HR 3717. Rep. Murphy contends that taking away advocacy for the desires and aspirations of recipients of mental health services will improve their lives. Our experience in Oregon shows us that nothing could be further from the truth.
People deemed to have a mental illness are often used as convenient scapegoats for social fears. Rep. Murphy has chosen to blame gun violence on those least able to defend themselves and to take away voluntary, evidence-based services and family supports that lead to recovery. In its place, the bill would heavily encourage the use of force and coercion that has been shown to be costly and ineffective. It also seeks to eliminate the voice of those who would be subjected to these misguided practices.
Help DRO to promote safe and effective adult mental health services, housing opportunities, integration of health and mental health services, child, family and preventative services, employment opportunities and peer supports. Say no to a false connection between mental illness and violence. (Study after study shows that no such connection exists. In fact, individuals with mental illnesses are 11 times more likely to be victims of violence than the general public.) Help Oregon to build on our successes, not our fears.
Please contact your representative in Congress and tell them NOT to co-sponsor HR 3717.
Sep 23, 2013
What do cell phones, flamers, Congress and I have in common?
A video is going around the internet of a comedian on a late night talk
show who explains why he doesn't want his kid to have a cell phone. He
says that when a kid tells someone else that she is fat, the kid sees
the painful reaction. But with a text, the kid only feels the
satisfaction of an act of cruelty, not the effect on the other person.
This reminded me of my own grade school experience that, yes folks, happened long before the internet was a gleam in some engineer's eye. A friend of mine convinced me that it would be fun to write an anonymous, obscene and insulting letter to a teacher we didn't like. We had a great time writing it, filling the word bomb with as much invective and ridiculous imagery as our pre-adolescent minds could muster. I don't know what we expected to happen next: perhaps some cartoonish burst of impotent anger and demands to get to the bottom of the outrage. Instead, the teacher took the next week off and we never heard mention of the letter.
My friend and I never talked about it after that. We knew we had to lay low. But when I heard that the teacher had taken time off, I had my first realization that the letter might upset a real person, not just some cardboard cutout of an authority figure. It was only much later that I could grasp that this upset may have come not from being insulted but from having to witness the unfettered cruelty of children. As for me, my feelings turned from the excitement of danger and transgression to a vague sense of shame at not only my callousness but also my cowardliness in the face of authority and my lack of integrity in acquiescing to my friend's plan.
Like the kid with the cell phone, I did not have to deliver my message face-to-face. I did not get to see a reaction. I did, however, know the teacher and was close enough to measure the impact of our attack. Perhaps my friend and I had a broader plea to send to teachers, asking to be treated better. Maybe we vaguely thought our plea justified the collateral damage of this one teacher's feelings. No, that is adult thinking.
When I read the venom of anonymous web site commentators and watch fellow citizens demand that people they don't know be rounded up and deported, denied food, cut off from medical care, excluded from decent schooling and the voting booth, I wonder if these jibes and demands are meant to apply to people the angry folks actually know. Is this "tough love" or "tough luck?" It's harder to bring hardship upon a friend than on a thousand strangers. Like the kid who doesn't have access to a cell phone, at least the tough guy has seen his friend's reaction. And like for me and my boyhood friend, maybe that sight holds a lesson.
Aug 30, 2013
Guest blog from Virginia Knowlton Marcus, the Executive Director of Maryland Disability Law Center
Originally published in the Maryland Daily Record, August 23rd, 2013.
The U.S. Senate hit a new low on Dec. 4, 2012, when 89-year-old Bob Dole, disabled war veteran and former Republican leader, was wheeled into the chamber to urge passage of the U.N. Convention on the Rights of Persons with Disabilities (CRPD), only to have it fall five votes short of the requisite two-thirds majority. Disability advocates, who had worked relentlessly to line up the necessary votes, watched in utter dismay as the coordinated misinformation campaign led by former Sen. Rick Santorum culminated in the shocking derailment of the CRPD.
The outcry was widespread and immediate:
“How those senators could look individuals who are disabled, whether by war, birth or accident, in the eye and justify their position is a mystery” (Washington Post).
“The Senate’s failure to ratify the UN Disability Treaty is a shame” (New York Times).
“The country had a solid opportunity to reclaim a position of leadership and moral authority in the world, and it lost it because of a misguided paranoia of a conservative minority” (U.S. News & World Report).
Then-Sen. John Kerry, who as chairman of the Foreign Relations Committee had successfully shepherded the treaty to the Senate floor, said: “This is one of the saddest days I’ve seen in almost 28 years in the Senate, and it needs to be a wake-up call about a broken institution that’s letting down the American people.”
This fight is not over. As CRPD supporter Sen. John McCain said after the December vote: “There are too many Americans and too many veterans’ organizations and too many people who are committed to this cause, that over time we may have every chance and every opportunity to succeed.”
With the world watching — including the 133 nations that have already ratified the CRPD — disability rights advocates, accustomed to adversity and long odds, are pressing for another vote on ratification when Congress reconvenes.
The first comprehensive human rights treaty of the 21st century, the CRPD was adopted by the United Nations General Assembly on Dec. 13, 2006. The fastest-negotiated human rights treaty in history, the CRPD received 82 signatories on the day it opened for signature — the highest number ever for a U.N. convention.
The CRPD is inspired by and modeled after the Americans with Disabilities Act, the landmark bipartisan framework signed into law by President George H.W. Bush on July 26, 1990. The CRPD sets forth the rights of people with disabilities and obligations of “States parties” to ensure those rights. It also establishes the Committee on the Rights of Persons with Disabilities to monitor and the Conference of States Parties to consider matters regarding its implementation.
This international treaty that identifies disability rights as human rights is the product of decades of work to create awareness and change attitudinal barriers that are holding the hundreds of millions of people with disabilities back from achieving their full potential. It is aimed at moving our societies away from considering people with disabilities as needing pity, protection or medical treatment toward recognizing people with disabilities as capable individuals with rights and abilities to make decisions and contribute meaningfully to society.
An all-star team of U.S. disability advocates was involved in the treaty’s development, yet U.S. leadership has notoriously lapsed in the face of this momentous opportunity, another casualty of the current political dysfunction — so far.
Last year, as the CRPD moved from Foreign Relations toward a vote before the Senate, false claims about the treaty’s impact on parents that homeschool their children created a tidal wave of opposition in conservative areas. The disability community was caught off guard and unprepared in the short run to counter the spreading fallacy and deluge of constituent contacts from homeschool educators that blanketed the Senate and caused a wavering of tenuous support, despite the fact that the CRPD does not affect these parents’ rights.
Other arguments in opposition to the treaty are similarly unfounded and largely addressed by the Reservations, Understandings and Declarations that accompany the treaty package before the Senate. The CRPD does not impinge upon U.S. sovereignty, create new opportunities for lawsuits or put a U.N. committee in charge of U.S. law.
Any guidance provided by the CRPD Committee and Conference is nonbinding; these bodies cannot compel the U.S. to take any action or change its laws. The Federalism Reservation explicitly provides that the CRPD cannot impact state laws, and pursuant to the “non-self-executing” declaration, the treaty’s provisions cannot, absent implementing legislation, be enforced in courts.
In fact, to the chagrin of those who take exception to U.S. exceptionalism, it has repeatedly been explained — very recently, in a statement issued by Secretary of State Kerry — that the purpose of the treaty is not to change U.S. behavior, but rather, to help other countries become more like us. Ratification and U.S. participation will help ensure humane treatment for people with disabilities abroad who languish in grossly substandard conditions and teach the benefits of an inclusive society.
Ratifying the CRPD is essential to asserting U.S. leadership and values, promoting equality of access and opportunity and advancing the inclusion of people with disabilities worldwide. It will protect Americans overseas, as people with disabilities and their families will be able to work, study and travel abroad assured of accessibility and dignity.
Some 660 veterans, disability and other domestic organizations support ratification of the CRPD, including business groups such as the U.S. Chamber of Commerce. The treaty will help create markets as other nations rise to U.S. standards, and we will benefit from increased entrepreneurial opportunities.
In his recent speech before the Disabled American Veterans’ convention, President Obama stated: “We’re going to keep fighting to ratify that treaty because the United States has always been a leader for the rights of the disabled. … It’s the right thing to do. We need to get it done.”
Ratification would reaffirm disability rights as a U.S. priority and re-establish our influence, leadership and credibility. A strong U.S. will not avoid the call to lead the global community of nations on human rights. Our ratification of the CRPD and ongoing leadership is crucial to eradicating disability discrimination worldwide.
Jul 24, 2013
A summary of major disability-related budgets passed by the 2013 Oregon legislature. Overall, a positive revenue projection, federal approval of the "K Plan", renewal of the hospital/nursing home tax, money from the Affordable Care Act and some PERS reforms allowed deep cuts from previous sessions to be addressed.
Addictions and Mental Health
Addictions and Mental Health (AMH) got a
total 18.4 percent increase from the 2011-2013 budget. Plus, the Affordable Care Act expansion is
expected to free up an additional $45 million in General Fund in this
budget, which can be used to expand services. The overall state mental health
budget, when you add money that goes to the Oregon Health Plan and the AMH, is
now over $1 Billion!
The Blue Mountain Recovery Center in Pendleton is slated to close on January 1, 2014. There is a reduction of $9.7 million in funding for non-direct care and administration at OSH, closing one geropsychiatric ward (an $8.8 million saving), restructuring OSH pharmacy operations (a $3.0 million saving), and $7 million reduction in overtime and non-direct care staffing costs.
Senate Bill 5507 allows up to $79,401,530 to be spent to continue building the Junction City campus of OSH. In addition, operating costs for Junction City are provided for the last three months of the 2013-15 biennium. The legislature claims that when you figure in the closure of PMRC and POSH, the switch to Junction City will only cost an additional $2.7 million in state General Fund.
The community mental health system got $26.6
million more than necessary to continue the current service level. Part of this will pay for three residential treatment homes in
Pendleton, on the site of the Eastern Oregon Training Center
(EOTC). These homes are scheduled to
open by January 1, 2014 and provide about 40 jobs.
An additional $21.8 million General Fund was approved for the expansion of children’s mental health services. This includes $1.8 million for the Early Assessment and Support Alliance (EASA) to be available statewide.
AMH plans to increase community provider rates by 2.4 percent. $4.2 million General Fund is slated for supported housing and peer delivered services, and $1.5 million is added for supported employment.
The legislature also directed DHS and OHA to create a plan for improved mental health services for seniors and people with disabilities.
DD services received $1,681,962,770 in total funds, a 15.8 percent increase over the 2011-13 budget. In addition to covering continuing service needs, it:
• Adds $1.2 million General Fund to support four additional Family to Family networks, making services available to more families across the state with a particular focus on eastern Oregon.
• As part of implementing an electronic web-based central client record and case management system, it adds $2.4 million General Fund ($4.8 million total funds).
• Adds $4.8 million General Fund ($13 million total funds) to cover roll-up costs associated a 1.25 percent wage increase for Personal Support Workers (PSW) effective April 1, 2013. The budget also includes $7.4 million General Fund ($19.9 million total funds) as a placeholder for costs that will remain indeterminate until the conclusion of collective bargaining.
• Adds $10.3 million General Fund ($25.7 million total funds) and 40 positions (26.40 FTE), for the Employment First Initiative and associated Quality Assurance efforts to carry out activities under the Governor’s Executive Order #13-04.
$29.5 million in General Fund will be used primarily to restore the six percent rate reductions taken by programs in previous years. These include group homes, specialized living, transportation, and adult foster care.
Approval of the K Plan is expected to draw down an additional $126.6 million Federal Funds for the budget.
The legislature also directed DHS to implement a
uniform needs assessment tool for individuals receiving DD services and
eliminate program wide monetary caps on brokerage consumer’s individual service
dollars. The amount of an individual's brokerage personal service budget is to
be based on needs identified through a functional needs assessment and the
individual’s goals identified through the person centered planning process.
Aging and People with Disabilities
APD received $2,425,682,990 total funds, which is 3.6 percent more than the 2011-13 budget. It includes:
• An increase of $1.6 million General Fund for research and development funding to support pilot projects to develop new approaches to long term care services.
• $9.1 million General Fund ($29.2 million total funds) to increase home and community based care rates that have been flat since July 2008.
• Funding to serve more seniors with severe mental illness in the community instead of at the more costly Oregon State Hospital, at a cost of $7.3 million General Fund ($10.7 million total funds). Another $1.9 million General Fund ($5.3 million total funds) will support community capacity needed to serve hard to place clients requiring specialized care.
• Funding for a new design and restart for the Money Follows the Person program.
DHS and OHA are directed to submit reports to the 2015 Legislature on how they have created greater access to mental health and addiction services geared to the needs of seniors and persons with disabilities.
Savings from the new K Plan will be used to increase rates, increase the in-home housing allowance to support consumers being served in their own homes, and convert the relative adult foster care program to an in-home program. A portion of the investment is also targeted for home care worker collective bargaining.
The continuation of the Long Term Care Facility Assessment allows $21.6 million General Fund to be freed up for other uses including higher reimbursement rates and outlines a strategy for helping providers reach a goal of reducing Oregon’s long term care bed capacity by 1,500 beds by the end of 2015.
OVRS received a 14.8 percent increase from the 2011-13 budget ($91,459,880 total funds of which &17,716,441 are state General Funds). The state funds are an 11.6 percent increase from the 2011-13 budget.
Centers for Independent Living received an additional $1.0 million General Fund which is expected to bring budgets for Eastern Oregon Center for Independent Living (EOCIL) and Lane Independent Living Alliance (LILA) up to minimum operating level and cover a portion of the requested increase in overall base funding to all CILs.
The Long Term Care Ombudsman received $585,488 General Fund and seven permanent positions (2.81 FTE) to support work under Senate Bill 626, which expands duties of the Long Term Care Ombudsman to advocate for residents of care facilities who have mental illness or developmental disabilities. There are about 7,600 persons living in 1,816 licensed adult foster homes and group homes in Oregon serving persons with developmental disabilities and mental illness.
The Marion County District Attorney received $200,000 General Fund to prosecute patients in OSH who assault staff.
DRO worked on a wide variety of bills this session. Here is a summary of what passed, what didn't, and what task forces were created.
Bills that Passed
Requires Oregon Health Authority to convene a committee to advise the Authority in adopting rules governing authority's on-site quality assessments of organizations that provide mental health or chemical dependency treatment. Governor signed. Effective June 13, 2013.
Revises standard for determination of whether individual is substantially limited in major life activity. Governor signed. Effective 1/1/14. This conforms state law with the federal ADA Amendments Act. The ADAAA, in essence, told courts to pay less attention to whether a person has a disability and more attention to whether a person was discriminated against on the basis of disability.
Requires Oregon Health Authority and Department of Human Services to adopt by rule, using advisory committee, uniform standards for collection of data on race, ethnicity, preferred languages and disability status in surveys and in all programs in which authority or department collects, records or reports such data.
Governor signed. Effective 6/4/13 We were able to have the bill amended to include disability.
Establishes requirements for school policies related to discipline, suspension or expulsion. Governor signed. Effective 6/4/13 Brought forward by our friends at Youth, Rights and Justice, this effectively ends "zero tolerance" policies in Oregon schools.
Adds to list of mandatory reporters for abuse of persons over 65. Governor signed. Effective June 11, 2013. Adds attorneys, dentists, optometrists and chiropractors. Also extends and expands the Elder Abuse Work Group. Adds mandate for training lawyers on elder abuse.
Allows parent or guardian of minor to file petition seeking appointment of guardian for minor as adult within 90 days before minor attains majority or such other time as court deems necessary and appropriate. Governor signed. Effective May 9, 2013. This addresses a gap that can occur when a protected person turns 18.
Removes, from health insurance coverage requirements for chemical dependency and mental or nervous conditions, exemption for treatment resulting from conviction of driving while under influence of intoxicants. Permits insured to utilize health benefit plan coverage as third party payer of costs of treatment. Governor signed. Effective June 13, 2013.
Prohibits court from considering party’s disability in determining child custody unless court finds behaviors or limitations related to party’s disability endanger or will endanger health, safety or welfare of child. Allows court to consider noncustodial parent’s disability in determining parenting time only if court finds behaviors or limitations related to noncustodial parent’s disability endanger or will endanger health, safety or welfare of child. Governor signed. Effective 1/1/14 We worked with the Oregon Law Center to amend the bill to address concerns that a parent's disability would permit them to endanger a child.
Provides that funds of person subject to protective proceeding may be used to pay reasonable fees, costs and disbursements for services related to protective proceeding. Clarifies when court approval is required for payment of fees from funds of person subject to protective proceeding. Specifies factors for court to consider in determining whether to award attorney fees in protective proceeding and in determining amount of attorney fees to award.
Prohibits reviewing court from modifying lower court decision making or denying award of attorney fees except upon finding of abuse of discretion.
Governor signed. Effective 1/1/14 This bill was brought forward by the Elder Law Section of the Oregon State Bar. Lawyers wanted more clarity about how they get paid in guardianship proceedings.
Directs State Board of Education to adopt process for by rule process to submit complaints about incidents involving use of physical restraint or seclusion in public education programs and process to investigate complaints. Directs State Board of Education to adopt by rule minimum standards for rooms used for seclusion Requires entity that has jurisdiction over public education program to submit to Superintendent of Public Instruction its annual report detailing use of physical restraint and seclusion during preceding school year and to include information about seclusion rooms. Passed House and Senate. This was DRO's top priority for the session. Now parents have a way to appeal the improper use of seclusion and restraint by their child's school. The Governor has not signed the bill but we expect him to do so.
Creates new outpatient civil commitment for individuals with mental illness. Passed House and Senate. This began as a bill to broaden the definition of who can be civilly committed. We were able to amend it to just allow a court-supervised outpatient commitment that does not involve any hospitalization. We still opposed the bill because it, in effect, allows courts to direct involuntary mental health treatment.
Expands definition of 'place of public accommodation' to include places owned or maintained by public body and services provided by public body with exceptions. Governor signed. Effective January 1, 2014. This was introduced to expand civil rights protection to parks and other publically-operated places. It may have the effect of expanding state protection against disability discrimination by local government.
Extends employee civil rights protections to interns performing work for educational purposes. Governor signed. Effective June 13, 2013. This provides the same protection against disability discrimination for interns as is presently enjoyed by employees.
Requires Oregon Health Authority to adopt standards and procedures to certify specified mental health providers to qualify for insurance reimbursement. Authorizes authority to adopt fee for such certification and for applying for such certification. Governor signed. Effective July 1, 2013.
Establishes Task Force on High School and Transition Success for Students with Disabilities. Sunsets task force on date of convening of 2015 regular session of Legislative Assembly. Passed House and Senate.
Removes sunset on use of restraint/seclusion on student in public schools. Governor signed. Effective date: 7/1/13 This was a major priority for DRO.
Prohibits public education program from purchasing, building, or using seclusion cells. Governor signed. Effective date: 4/5/13.
Creates fitness to proceed procedures for juvenile court delinquency proceedings. Passed House and Senate.
Allows student with disability to earn college credit as part of transition services. Passed House and Senate. Late in the session, this bill was amended to allow the Portland Community College to establish a public safety training facility in Columbia County without having to undergo review by the Land Use Board. Nevertheless, the disability portions survived.
Requires professional fiduciaries (people who are paid to act as a guardian) to be certified by the Center for Guardianship Certification as a "National Certified Guardian" or a "National Master Guardian." Passed House and Senate. This continues a longstanding effort to create some level of oversight for professional guardians.
Establishes pilot program to assist students with disabilities to transition to life after high school. Passed House and Senate.
Requires that parents be notified in advance of a group mental health screening of students and be permitted to opt out of the screening of their child. Governor signed. Effective January 1, 2014.
Requires Department of Human Services to develop plan for improving long term care system in Oregon. Specifies required elements of plan.
Requires department to convene committee to assist in development of plan and specifies membership of committee. Requires department to report plan to Legislative Assembly by February 1, 2015. Governor signed. Effective July 1, 2013. This bill began as mandating a plan to decrease the use of nursing homes and eliminate the right to choose a nursing home. Advocates succeeded in slowing down the planning process and not having direction on the outcome of the process.
Update of state laws regarding services for individuals with intellectual and developmental disabilities. Governor signed. Effective 4/11/13. This is a total re-write of the statutes governing DD services which were out of date. We succeeded in getting some good language included on client rights.
Adds PTSD to conditions that are appropriate for medical marijuana. Governor signed. Effective January 1, 2014.
Requires that health insurance policies cover applied behavior analysis for treatment of autism. Passed House and Senate. The bill requires coverage for screening and diagnosis of autism and medically necessary treatment for an individual who begins treatment before 9 years of age subject to certain qualifications. It also creates a Behavioral Analysis Regulatory Board.
Permits Director of Department of Consumer and Business Services to seek restitution on behalf of consumer that suffered actual damages as result of insurer’s violation of Insurance Code or breach of insurance contract or policy and to seek other equitable relief that director deems appropriate under circumstances. Governor signed.
Establishes a new civil commitment for "extremely dangerous" persons. Passed House and Senate. We worked to improve this bill and ultimately opposed it. It is designed to put people in long-term commitment who have committed violent crimes but can not be prosecuted because of psychiatric disorders.
Modernizes language in civil commitment laws. .Governor signed. Effective January 1, 2014. Puts "people-first language" in a number of statutes.
Establishes Task Force on the Delivery of Human Services. Governor signed. Effective July 1, 2013.
Authorizes health care facility, health care provider and patient to file notice of adverse health care incident with Oregon Patient Safety Commission.
Sets forth procedures by which health care facilities, health care providers and patients may engage in discussion and mediation related to adverse health care incidents. Directs commission to use information received from notices of adverse health care incidents to improve patient outcomes and reduce frequency of adverse health care incidents. Prohibits insurers from taking certain actions based on notice of adverse health care incident. Establishes Task Force on Resolution of Adverse Health Care Incidents. Directs task force to report to Legislative Assembly. Governor signed. Effective 3/18/13
Permits minor 14 years of age or older to obtain, without parental knowledge or consent, out-patient diagnosis or treatment of mental or emotional disorder or chemical dependency from professional counselors and marriage and family therapists. Governor signed. Effective 1/1/14
Requires Department of Human Services to provide adults with developmental disabilities needing comprehensive services at least three options for placement prior to initial placement or transfer, subject to exceptions. Gives adult right to choose placement option. Governor signed. Effective July 1, 2013. This was one of 4 bills brought forward by SEIU regarding DD services.
Clarifies state law regarding the use of service animals in public accommodations and state government services. Governor signed. Effective June 26, 2013. We spent lots of time on this effort to conform Oregon and federal law while maintaining existing additional rights and expanding the right to use animals in training in public accommodations and state government services.
Expands duties of Long Term Ombudsman to mental health and developmental disabilities community facilities. Passed House and Senate.
Requires Department of Human Services to assess support needs of each adult with developmental disability who is receiving comprehensive services and pay service rate to service provider that is sufficient to meet assessed support needs. Requires notice to adult and other specified persons of detailed accounting of service rate if rate changes. Requires department to conduct assessment no later than 90 days after request by specified persons based on change to support needs. Governor Signed. Effective July 1, 2013. Another SEIU bill.
Imposes on nonschool athletic teams requirements for recognizing and responding to possible concussions. Governor signed. Effective January 1, 2014. Brought forward by the Brain Injury Alliance of Oregon.
Creates Work Group on Corrections Health Care Costs. Specifies membership and duties. Requires work group to make recommendations for legislation to reduce health care costs of Department of Corrections. Governor signed. Effective June 26, 2013.
Supports adoption of State Plan for Alzheimers Disease and Related Dementias in Oregon. Signed by Speaker and President.
Bills that Died
Expands crime of assault in third degree to include, under certain circumstances, causing physical injury to person employed at state mental hospital. DRO successfully opposed the bill but the Marion County DA was given extra money to prosecute patients.
Requires Oregon Health Authority to establish system for repurposing durable medical equipment that is no longer medically appropriate for medical assistance recipients for use by other medical assistance recipients.
Modifies crimes of intimidation in first and second degree. Prohibits court from setting aside conviction for intimidation in any degree. Prohibits civil compromise of crime committed because of defendant's perception of another person's race, color, religion, sexual orientation, disability or national origin.
Includes finding of guilty except for insanity as conviction that may be expunged. A DRO bill. This was our only bill that did not receive a hearing.
Creates a State office of the Public Guardian and Conservator. DRO worked on the commission that promoted this bill. Ultimately, it failed due to cost.
Requires DHS to establish advisory committee to recommend development of general assistance program.
Funds expanded services at independent living centers.
Requires Department of Human Services to notify school district, Teacher Standards and Practices Commission and Department of Education of report of alleged abuse occurring at school. DHS agreed to meet with us to find an administrative solution. We have met but have not made progress in finding a way to assure that alleged abuse of school children is investigated.
Prohibits finding of unfitness, for purpose of terminating parental rights, based solely on emotional illness, mental illness, intellectual or developmental disability or other disability. A DRO bill that was opposed by the Oregon Department of Justice. They said that the bill was not needed because other laws do not allow discrimination. They oppose any change in the wording of the present statute.
Directs OHA to seek funds to pay for crisis intervention services and residential care for people with MI.
Requires superintendent of state mental hospital or director of facility to give notice to district attorney and counsel for defendant of court’s determination that defendant lacks substantial probability of having capacity to stand trial or that defendant is entitled to discharge. Applies only during applicable statute of limitations period for charged offense. A DRO bill that was incorporated into SB 421.
Requires superintendent of state mental hospital or director of facility to evaluate defendant for capacity to stand trial if district attorney intends to file charges against defendant after defendant is discharged by court order. A DRO bill that was incorporated into SB 421.
Authorizes court, upon finding defendant unfit to proceed by reason of incapacity, to order involuntary medication of defendant under specified conditions. The "Sell Hearing" issue prompted by the US Supreme Court case that set standards for when a person can be involuntarily medicated. It did not go forward due to technical issues but will likely re-emerge next session.
Requires Oregon Health Authority to create new programs and expand existing programs to increase capacity statewide to provide mental health services and serve individuals with mental illness.
Creates legislative Mental Health Oversight Committee. Specifies membership and duties. Requires committee to monitor implementation of and expenditures under Act and make recommendations for legislative changes. This bill failed because it relied upon an increase in the cigarette tax for funding and that increase did not pass.
Delivery of Human Services (SB 450)
Future of Public Health Services (HB 2348)
High School Transition Success for Students with Disabilities (HB 2743)
Primary and Mental Health Care (HB 2902)
Jun 15, 2013
Why is Oregon's approach to spending on mental health services like a confidence game?
I've just observed the 37th anniversary of my arrival in Oregon. It was a sunny June day in 1976 when we pulled our pickup truck into The Dalles, having driven all the way from the East Coast. After a night in a cheap motel, it was on the Portland where I would study for the Oregon Bar Exam and prepare for my first law job as a VISTA volunteer attorney in the Klamath Falls Legal Aid office.
I was thinking back to my native soil of New Jersey this week as I examined the still-developing Oregon mental health budget for 2013-15. As a teen, I would take the bus into New York and just hang out. Manhattan hadn't been neatened up back then and the streets offered lots of entertainment including the guys enticing you to play three card monte. A key to that game, for those who don't know, is the art of misdirection. The dealer gets you to pay attention to one hand while assuring your doom with the other.
So what does this have to do with Oregon and our mental health budget? Well, here in the land of "transparency," there is still a need for hard-ball politics. And here in the land of socially progressive policy, there is still a need for, well, hard-ball politics.
Consider all the hoopla that accompanied the Governor's recommendation that the coming budget include a large increase for community mental health services. Add to that the additional hoopla that surrounded a bill from the Senate President to add even more money to the community mental health coffers. Now, all this noise may have been for the benefit of the US Department of Justice that has been investigating why Oregon spends so much on its state mental hospitals compared to its community system. Or perhaps it was trading on the public's fears and remorse about the shootings in Connecticut and at Clackamas Town Center. Maybe the death of James Chasse and other death-by-police situations had caught lawmakers' attention. But whatever it was, the legislature seemed to have discovered a new enthusiasm for community mental health services.
What we haven't heard much about, either through press releases, hearings or public discussion is the legislature's quiet march to build a new state mental hospital in Junction City and to fund a new pod of group homes near the old Blue Mountain Recovery Center in Pendleton. As one long-time mental health administrator told me, no other state in the country is building new, large state hospitals. In this, Oregon appears to be unique. Other states are certainly not moving in-patient services away from their major population centers. Oregon is. Most states are working to lessen the segregation of its mental health services by moving away from the 20th century model of building big hospitals next to prisons on the outskirts of town or in rural areas where there is less public resistance. Not Oregon.
Take, for example, the plans in Pendleton. Creating a pod of group homes that are physically isolated from the town (in fact, these would be located on the site of the old Eastern Oregon Training Center) achieves the goal of segregation of mentally ill persons while cleverly leveraging federal Medicaid money by pretending that these are "community-based services." It's a perfect solution for Oregon: it avoids community resistance to having "those people" within sight, it brings a federal match for state expenditures, and it allows the state to claim that it is offering community-based residential services rather than continuing segregated institutional care.
Now that we are in the late stages of legislative budget formation, we will see whether the promises of increased funding holds up. But, at the same time, the very quiet process of approving the release of bond funding for Junction City Hospital and paying for the debt load for Oregon's new institutions is moving steadily forward. Oh, and did you know that it will cost close to $200 million dollars, vastly more than either the Governor or legislators have proposed for improved community mental health services? I bet you didn't.
So while Oregon makes lots of noise about how it wants to expand community services, the real money goes to perpetuating the segregation of people with mental health needs while paying for the jobs to build and staff new institutions. And in years ahead, those buildings will need to be maintained and there will be a strong and ongoing constituency from labor and local communities demanding that those jobs be protected and well compensated. Meanwhile, funding for community services will be subject to all the inconsistency that history has shown to plague them. It is the lack of dependability for community services that has been bemoaned for over 40 year and is generally blamed for the failings of what some call "deinstitutionalization."
But as the guy on the New York street corner of my youth would tell you, you shouldn't be looking over there. Just give me your money.
Apr 15, 2013
Empty Promises for People in Sheltered Workshops
On April 10, 2013, the Governor of Oregon issued an Executive Order on employment services for persons with intellectual and developmental disabilities. The Order comes just two weeks after the United States moved to intervene in a federal lawsuit, Lane v. Kitzhaber, that seeks to end the unnecessary segregation of persons with disabilities in sheltered workshops. While the Order tacitly acknowledges the state’s failure to provide adequate employment services over the past two decades, it also expresses a desire to have more coordinated activities between state agencies. It does little, however, to ensure that individuals with disabilities will ever be able to secure real jobs in the community or earn at least a minimum wage in an integrated employment setting.
Under the Executive Order, only 1/3 of all persons who are segregated in sheltered workshops will be provided employment services. This means that at least 1,600 individuals will have to remain in the workshops. And even for those who do receive employment services, there is no assurance that these services will be designed to enable them to ever leave the workshops, let alone to access real jobs in competitive employment settings. In fact, given Oregon’s past practice of counting individuals in sheltered workshop who receive even 1 hour a month of job counseling as getting “supported employment services”, it is possible that nine years from now, the order could result in no one leaving sheltered workshops.
The Executive Order includes no commitments about the quality, quantity, or outcomes of the employment services. Consequently, it appears unlikely to result in people with disabilities having access to typical employment settings, integrated services, or real wages. The Order also fails to address the service needs of the overwhelming majority of individuals served by the State’s system. It plans to administer employment services to only approximately 10% of the total number of people with intellectual or developmental disabilities served by the State’s day services.
Although the Order provides for “a significant reduction over time of state support of sheltered work,” it mentions no adequate or effective commitment to benchmarks, system outcomes, or re-allocating or re-distributing resources to provide individuals with disabilities access to employment services in integrated settings. In sum, the plan all but assures that the goals for delivering services to individuals in the community are advisory goals and not commitments.
The Order also considers group enclaves and mobile work crews to be “integrated employment settings,” even though people in such settings frequently do not interact with non-disabled individuals and often earn sub-minimum wages.
The Lane v. Kitzhaber class action suit and the United States’ Complaint-in-Intervention ask that Oregonians with I/DD who can and want to work in integrated employment settings have a meaningful opportunity to do so. The Governor's Executive Order stops short of giving that assurance. Instead, it sets out a policy to provide only a small fraction of the people in Oregon's employment service system with the assistance they need to achieve their goal of a real job in the community.
Mar 11, 2013
If a person with disabilities is offered to choose between an established segregated service or a poorly funded, trained or regulated integrated service, does she really have a "choice?"
The word “choice” has always been a cornerstone of disability rights consciousness. Here at DRO, our three word motto, “Opportunity, Access, Choice,” recognizes this important concept. But as the years go by, I find that the original vision expressed by the word "choice" has been co-opted by some people who tilt more toward protection than liberation and those who find it expedient and comfortable to perpetuate the status quo.
Add to that a raft of social science that has hit the best seller list demonstrating that choice can be easily manipulated. Anyone who works in advertising is probably wondering where I have been. But after quite a few government meetings discussing “opt-in” vs. “opt-out” enrollment strategies, I have gotten the message. For most of us, choices can be engineered by how the options are presented.
Advocates of large state institutions suggest that such facilities offer people with disabilities “choice” of services. In Oregon, some advocates are working to preserve the choice to live in a nursing home. In publicly-funded sectors, the right to “choose” a service that is equally (or less) effective but costs more usually results in a decrease in the total number of people who can get services. In that case, a choice is not personal, it directly affects others. But even if resources were not an issue, does an objectively inferior option truly provide the type of “choice” that disability rights advocates want?
In Sunday’s New York Times Book Review, the cover story reviews “Lean In” by Sheryl Sandberg. The book is written by a very successful businesswoman who promotes self-confidence and hard work for women who want to become powerful corporate leaders. The review includes a quote from the book that seems to be relevant beyond the corporate establishment:
For decades, we have focused on giving women the choice to work inside or outside the home … But we have to ask ourselves if we have become so focused on supporting personal choices that we’re failing to encourage women to aspire to leadership.
When DRO started investigating Oregon’s sheltered workshops, some people told me that we needed to honor the choice of those who prefer segregated services to community-based jobs. I learned that sheltered workshops are a good choice if what you want is dependability, stability and availability. After all, supported employment services in Oregon have none of those qualities.
This reminded me of the time when capable high school students of the wrong gender and color were encouraged to limit their aspirations to traditionally acceptable roles. And if this discouragement was not enough, colleges and businesses had quotas and policies that assured that few, if any, of them moved up in the social hierarchy.
And so whether you are an aspiring CEO of Facebook or a high school kid with a disability who wants to follow her dream when she graduates, choice means more than having the right to select from available alternatives. It requires encouragement, expectation, risk and real opportunity. Call it “meaningful choice.”
If a person is offered delayed access to unproven, sparsely available job training and supports, or services that may land a person in a sub-minimum wage job in an enclave for a couple of hours a week, the stability of a workshop looks pretty good. I suppose you could call that choice, but it isn't meaningful choice.
Mar 03, 2013
Not us. DRO is suffering cuts, but we know the disability rights movement remains strong. Our vision remains clear: a world that understands that people with disabilities are not "broken" and in need of fixing. Instead, our environment and attitudes are the things that need to be fixed.
I’m on a flight right now to Washington, DC for the annual meeting of directors of protection and advocacy agencies. There is a “P&A” in every state and territory as well as one on the Navaho Nation in Arizona.
It just so happens that this meeting coincides with the advent of “sequestration,” the federal government across-the-board cut in discretionary spending. Sequestration has gotten a lot of press, but it is not the only cutback happening. The federal government has been quietly tightening its belt for some time now.
For DRO, this has meant laying off six staff over the last year and not filling two vacant positions. Our staff positions have now been cut by about 1/3 over the past few years. We have had to adjust by serving less Oregonians with disabilities and focusing less on individual representation and more on individual advice and referral and legal work that may affect groups of people rather than individual cases.
DRO receives most of its funding from the federal government. Since we often bring legal actions against state and local governments, they have not seen the wisdom of providing us with resources. We do get some (much appreciated) support from the Oregon Law Foundation, but the lion’s share of state and foundation support for legal services (including court filing fees) goes to Legal Aid, which is large enough to have a well-staffed and sophisticated fundraising organization.
Despite these challenges, DRO has a very skilled and experienced staff that gets great results of our community. Whether it is legal actions, accurate and useful information, advocacy with government agencies and the legislature or investigation and prevention of abuse and neglect, DRO’s existence assures that the voice of disability rights is heard and honored in Oregon.
The disability rights movement is about much, much more than rights enforcement. It has a vision of a world that understands that people with disabilities are not "broken" and in need of fixing. Instead, our environment and attitudes are the things that need to be fixed. As a vital part of the disability community, DRO shares, communicates and applies this vision of a fully inclusive society.
There is much more to be done. Change takes time. Civil rights do not protect themselves. DRO will be here for years to come to continue our work, as part of our Oregon disability community, to have a fully accessible, safe and just society.
Jan 18, 2013
Send us your email address if you would like to receive DRO's weekly Legislative Update during the 2013 session.
The Oregon legislature is poised to begin its 2013 session. Today, I am sitting in a hearing room listening to a full day training for legislators on mental health and the criminal justice system. In the wake of the tragic shootings at Clackamas Town Center and Newtown, Connecticut, legislators are looking at better ways to keep individuals and the community safe as well as making the best use of our criminal justice and mental health resources.
DRO is participating in this discussion and is working on a number of other disability-related issues and bills. In the weeks and months ahead, we will be working on legislation to:
1. Improve communication between the state hospitals and district attorneys regarding patients who are mentally incapable to facing criminal charges,
2. Limit the transfer of seriously mental ill patients from the state hospital to jail,
3. Allow findings of guilty except for insanity for minor crimes to be expunged from a person's record,
4. Extend the law regulating seclusion and restraint of school children beyond 2017,
5. Direct schools to send seclusion and restraint reports to the state Department of Education,
6. Clarify that a person cannot lose his or her parental rights solely because of their disability,
7. Extend state law protection for the use of assistance animals to all people with disabilities,
8. Strengthen the law limiting use of seclusion or restraint on individuals with intellectual disabilities.
DRO will be involved in monitoring and commenting on many other bills affecting Oregonians with disabilities as the session moves ahead. As usual, we will send out a weekly Legislative Update during the session to our email list. If you would like to be on that distribution list, send us a request with your email address, sit back and enjoy the action!
Nov 21, 2012
Giving thanks for our community.
The Board and Staff of DRO Are Thankful for Your Belief that:
- Every Oregonian should have the opportunity to participate in society.
- No-one should be unnecessarily segregated in institutions, facilities or workshops.
- Jails and police should not be the primary social response to people in mental health crisis.
- Abuse, neglect, or victimization of vulnerable people must not be tolerated.
- A good public education should be available for all children.
- Employment at a fair wage should be attainable for all.
- Physical or mental disability should not condemn a person to poverty and dependence.
- Strong and persistent advocacy is necessary to realize these beliefs.
We Are Thankful for your support for Disability Rights Oregon!
Nov 20, 2012
It's been many years since Senator Avel Gordly asked the Department of Justice to look into shameful conditions at Oregon State Hospital. She started a series of events that no-one could have predicted and may possibly transform Oregon's behavioral health system and police services.
Back in 2004, State Senator Avel Gordly sent a letter to the U.S. Department of Justice (USDOJ). She asked that it investigate possible civil rights violations of past and current patients at the Oregon State Hospital (OSH) caused by "serious overcrowding and understaffing.” Almost two years later, the USDOJ notified Governor Kulongoski that it was initiating an investigation of conditions and practices at OSH.
Concerned about a federal take-over of the hospital, the state took major steps to improve OSH including legislative approval of $458.1 million to replace OSH with two new state hospitals, one in Salem and one in Junction City.
In January 2008, USDOJ delivered its finding to the Governor. It found that Oregon was violating the civil rights of OSH residents because of:
- Inadequate protection from harm
- Failure to provide adequate mental health care
- Inappropriate use of seclusion and restraint
- Inadequate nursing care
- Inadequate discharge planning and placement in
the most integrated setting
To this day, the state and USDOJ have not come to terms on a settlement of all these findings. State officials say that they have improved OSH without federal interference. Since they released the findings, USDOJ has told the state about its concerns that OSH patients are not getting adequate physical health care. It has also warned the state that building additional hospital beds at the expense of community services would be viewed as a problem.
Meanwhile, in 2009, President Obama launched “The Year of Community Living” in recognition of the tenth anniversary of the Supreme Court’s decision in Olmstead v. L.C. He directed federal agencies to vigorously enforce the civil rights of Americans with disabilities. The USDOJ responded by making enforcement of Olmstead a top priority. In 2010, it announced a national initiative to investigate ADA complaints and enforce the Olmstead "integration mandate" of the ADA.
Then, in early 2011, USDOJ lawyers met with Oregon officials and community partners to renew its investigation of whether Oregon was violating Olmstead. Later that year, it also opened an investigation into the use of force by the Portland Police Bureau (PPB) against people living with mental illness.
This month, both of these investigations have been settled. The Portland settlement contains over 100 changes in policies, practices and procedures that affect police use of force, police training, access to community mental health services, crisis intervention resources, officer accountability, and community oversight. Police are to use more de-escalation techniques and less tazers, a new Crisis Intervention Team and more Mobile Crisis units will be created, and local CCOs are to create new “drop-off centers” for individuals in crisis, and new addictions and mental health-focused subcommittees to pursue long-term improvements to the behavioral health system in seven specified areas, including the expansion of peer services. The settlement also mandates improved investigation and oversight of police use of force and swifter disciplinary procedures.
The USDOJ settlement with the state also addresses crisis intervention, but affects a wider scope of mental health services. Remember that the Olmstead case says that individuals with disabilities have the right to receive public services in the least segregated setting that is appropriate to their care. In a settlement that is as unique as Oregon’s health care transformation process, USDOJ agreed to work with the state “by embedding reform in the design of the State’s health care system.”
This agreement calls for Oregon to collect statewide behavioral health data about services currently being provided in order to assess the nature of those services and the outcomes they achieve. A comprehensive list of data “metrics” are to be collected, reviewed and evaluated by the parties to identify gaps in services and how those gaps can be filled. This process will continue through 2015.
The USDOJ settlements, together with Oregon Health Care Transformation and implementation of the Affordable Care Act, offer a rare opportunity to make major reforms to how the state funds and delivers behavioral health and police services. Success will require full ongoing engagement of advocates, consumers, providers, and public officials as well as lawyers and the judiciary. We need to keep at it over the long haul. According to the agreements, if all goes well, their work will be fully completed in 2017, a mere 13 years after Senator Gordly sent her letter.
Sep 30, 2012
Recent events highlight how Oregon officials use their authority to forcibly hold and control individuals with serious mental illness. Jails, police, DAs, and hospital staff all complain that they don't have the tools to keep people safe. It's clearly time for a change.
A week ago, last Friday morning, I was sitting in a meeting of the Oregon Health Plan's Metrics and Scoring Committee. We were considering how to use data to create fiscal incentives for Community Care Organizations (CCOs) to improve public health. This is, frankly, a bit over my head, but I'm sticking with it. Oregonians with disabilities are depending on health care transformation to improve their access to medical services and to help them stay healthier in general. Finding ways to reward CCOs for doing a good job seems like, well, a good job.
While I pondered all of this, I received a text message from a reporter at Oregon Public Broadcasting. The message asked if I would be on the call-in show that day at noon. The topic was whether more nurses are needed at Oregon State Hospital. I agreed, thinking that I would say: "Yes! More nurses would be very nice."
Two hours later, when the radio show got underway, a nurse from the hospital spoke about the need for more staff. Fine. But she went to say that the patients are dangerous and that staff are unfairly hamstrung by investigations of patient abuse and by limits on how often staff can tie down and lock up patients.
I know that there are some patients that can be very challenging, and even dangerous, to staff. But I also know that these are a very small percentage of the residents. (I’ve got the data.) It seems, however, that some hospital workers cannot resist the temptation to paint all the patients as dangerous and to use this claim to excuse unprofessional and sometimes bullying conduct. The hospital superintendent (i.e. "Management") was also on the show. He sidestepped the abuse and restraint issues, saying that the hospital has enough staff but that they need more and better training.
Fast forward a few days to a report in The Oregonian (http://www.oregonlive.com/aloha/index.ssf/2012/09/oregon_state_bar_to_prosecute.html) that a district attorney and criminal defense attorney are being prosecuted for ethics violations by the Oregon State Bar. They are accused of having a mentally ill man committed to the state hospital from his jail cell using a fictional law. DRO had earlier investigated this situation because it appeared that the man had been discharged from the state hospital directly to jail where he languished for months without treatment. We wanted to know why. You can read our conclusions at: http://www.droregon.org/THE%20INCARCERATION%20OF%20DS%20-%20AN%20INVESTIGATIVE%20REPORT.pdf
It's common these days for newspaper stories to have a place for the public to comment. After this article, I noticed that a number of people thought that the mentally ill man was not entitled to any rights, treatment or safety because he was accused of murder. I also heard from a district attorney in another county who implied that it is unfair for lawyers to be held accountable for their actions when their intentions are good. The intention here, he submitted, was to keep the public safe.
In today’s Oregonian, we have a third case involving a man with mental illness who gets caught in a dangerous custodial situation. http://www.oregonlive.com/news/oregonian/steve_duin/index.ssf/2012/09/steve_duin_business_as_usual_a.html
This one involves a man who turned himself in to the authorities because there was a warrant for his arrest. He had not appeared at a hearing because he was too disorganized to get there. The authorities put him in jail and would not let him have his medications. He went into crisis and was beaten and tazered. Efforts by DRO to work with the county jail to find ways to avoid a recurrence were brushed aside. It costs too much, they said. Don’t blame us for a broken mental health system, they said. You guys threatened to sue us, they said.
These recent events - as well as the recent US Department of Justice condemnation of Portland Police tactics - lead me to a modest (or so I think) suggestion. Let’s all recognize that mental illness is, and always has been, a part of the human experience. Let’s admit that this fact will not change by improving some “mental health system” that nobody can describe. People will continue to have mental health needs and some will go into crisis for a variety of reasons. So, I think, we must be prepared to respond in the most safe and humane way.
What if health insurance and providers, public human services, schools, police, jails and unions consider how to modify their practices toward a common goal of heading off crisis and minimizing the risk of injury and trauma that comes with crisis? Oregon’s health care reform efforts are, at least, talking about this. If this conversation can expand beyond Medicaid to our public and private institutions, we could establish a coordinated approach that not only recognize the reality of mental illness but sees the human, community and fiscal benefits of minimizing the violence, trauma and stigma associated with crisis.
There is no doubt that working in a state hospital is a demanding job. The responsibility that a district attorney has to maintain public safety is not an easy burden. The same can be said for operating a county jail. While these individuals must not avoid accountability for how they use their power over others, they must also be given the tools to use their authority wisely and safely. Broad systemic reforms that reward outcomes, not defense of funding silos and special interests, are needed. More money for the "same 'ol" just ain't gonna cut it.
Jul 12, 2012
For Americans with disabilities, the Affordable Care Act promises to be the greatest civil rights advance in the last twenty years.
I just read some remarks by Kathleen Sebelius, Secretary of Health and Human Services, that she gave to the Interagency Autism Coordinating Committee a couple of days ago. This committee was created as part of an overall federal strategy to address autism and "create new opportunities for those living with autism and their families to reach their full potential."
While discussing the many initiatives that have been launched to address this goal, she also mentioned the effect of the Affordable Care Act (ACA). She said:
"Now, thanks to the law, insurers can no longer deny coverage to children with pre-existing conditions like autism and new plans must cover autism screening for children at no cost to parents. The law will also ease the financial burden on treatment and care for people living with autism by allowing young adults to stay on their parent’s coverage until age 26 and putting an end to lifetime dollar limits on care."
This observation by Secretary Sebelius could apply to any health or disability condition. Although the ACA has been so highly politicized that it is difficult to discuss without triggering intense emotion, it is important for individuals with disabilities to examine what it will mean for their "ability to reach their full potential."
The ACA, as we know, is Congress' attempt to reign in the spiraling cost of health care to individuals, businesses and government. The US Supreme Court recently found that doing so is a proper role for the federal government as long as it is done in a constitutional way. (The way of doing it, they said, could be by taxation but not by using the Congressional power to regulate commerce.) But a secondary effect of the ACA will be to expand the civil rights of individuals with disabilities.
Of course, we have had the ADA for over twenty years and the Rehabilitation Act for almost twice as long. But one huge exception under these laws has been discrimination in health insurance coverage. Put simply, insurance companies have been allowed to discriminate against people with disabilities if they can show that it saves money to do so. The only way to combat this discrimination has been through mandatory coverage laws such as mental health parity.
The effect for people with disabilities has been to significantly add to their cost of living and create incentives for them to seek public support. A person who could work may choose not to in order to keep health insurance. DRO's Benefits Planning program (which Social Security just defunded) was designed to help people with disabilities find a way to work and maintain benefits. Sadly, the ADA did not touch this area of discrimination that has a major effect upon people's lives.
But now, the ACA says that insurance companies cannot deny coverage for people with pre-existing conditions. They cannot throw a person off coverage because she gets too sick or costs too much. They must fully cover preventive and diagnostic services. They must provide coverage for mental health, chemical dependency, child vision and dental and "habilitation" services and devices.
Habilitation is like rehabilitation except that the goal is not to return a person to a previous level of functioning but to help a person to maintain or achieve a higher level of functioning. An example is speech therapy for a child with a communication disorder.
Contrary to the claim by some politicians that the ACA will give people stuff for free, health insurance will continue to cost money. But policy costs will not be controlled by excluding people with disabilities and use of other discriminatory practices. A fairer approach, seen here in Oregon, is the state's Health Care Transformation effort. Oregon seeks to change the way health services are delivered in order to emphasize health maintenance rather than reward over-usage by some and exclusion of those who need services the most.
The ACA does not solve all problems for access to needed services but it points a way toward addressing the shared costs of our health care system in a fairer way. Oregon is out front on these efforts. This is good news.
May 27, 2012
Remembering the sacrifices of those who serve our collective, public interest.
On Memorial Day, we give thanks to those who died while serving in the US military. The holiday had its start during the Civil War and was originally known as Decoration Day, from the custom of decorating the graves of fallen soldiers.
On this day, I stop to recall the sacrifices made by our armed forces and I also think about others who have committed their lives to the pursuit of a more just society. In the military, soldiers may be asked to put their lives on the line in pursuit of the "national interest" or some other seemingly abstract mission. We honor them because their purpose was not to advance their individual desires but to further a collective, national interest.
Similarly, those who work in publicly-funded nonprofits like DRO, deploy their skills to further a national interest for pay that does not approach the private market rate. Usually, this does not require putting one's life on the line. But as we learned this week of the death of Jennifer Warren, a mental health worker who was stabbed to death while delivering medication to a client, public service can have terrible risks.
That is why, this Memorial Day, I want to remember the sacrifices of Ms. Warren and all the publicly-funded workers who put it on the line every day to help their fellow men and women to live better lives. I also want to acknowledge four Benefits Planners at DRO who are being laid off this month because the Social Security Administration couldn't get it together to reauthorize and refund the Work Incentives Planning and Assistance Program (WIPA).
This is a program that helps people on Social Security return to work without unnecessarily risking their public benefits. It has a great track record and nobody at Social Security or in Congress has voiced opposition to its continuation. But they just can't get the reauthorization done in the present Washington climate. And so our skilled, diligent and productive staff are out of jobs. All are people with disabilities or family members who are uniquely suited to work with our clients. But the national interest as defined above has seen fit to allow their sacrifice.
For those in the military, this may sound familiar. And so, this Memorial Day, I will keep all of our dedicated Americans in mind: those who have fallen in battle and those who have died or lost their livelihoods serving the public interest.
Mar 20, 2012
A recent $3M jury award begs the question: does Oregon promote disability discrimination?
Earlier this month, a Portland jury awarded nearly $3 million to a couple who claimed that they were damaged by the negligence of Legacy's Center for Maternal-Fetal Medicine. The couple, who were expecting a baby, had gone to Legacy for a prenatal test called chorionic villus sampling (CVS). CVS is supposed to determine if a fetus has a normal chromosomal profile. The test results showed that all was "normal" and yet, months later, the couple gave birth to a baby with Down syndrome. According to the Oregonian newspaper, the couple sued to recover the "estimated extra lifetime costs of caring for a child with Down syndrome."
The legal argument went like this: the couple had depended upon Legacy to perform competent testing. If they had known the fetus had Down syndrome, they would have chosen to abort (like 89% of other pregnant women who receive this information.) Having foregone abortion in reliance upon the test results, the couple had the baby and now expected a significantly greater financial burden to raise and care for their child.
For many parents of children with Down syndrome, this verdict was a slap in the face. It is bad enough that so many expectant parents choose to abort when learning that they will have a child with disabilities. But for society, a court and a jury to award damages to a couple who have given birth to a child who is entitled to the same love, support and opportunity to reach his or her potential as any other person, seems insulting and nonsensical.
Viewed from a public policy perspective, this case says that a parent who chooses not to have prenatal screening or chooses to have a child with Down syndrome is expected to carry most of the additional financial load of raising the child with, in certain cases, meager public assistance offered by the state of Oregon. A parent, however, who chooses to have testing and is willing to abort upon receipt of the results, shall be held financially harmless.
Ten years ago, in a ceremony at the Oregon state capitol, Gov. John Kitzhaber apologized for the state's past policy of forcibly sterilizing people who were in state care. He was the second governor in the nation to formally recognize that this practice was wrong. (Oregon had been one of 33 states with forced sterilization laws.) Kitzhaber told a packed room of about 80 survivors and their supporters: “The time has come to apologize for misdeeds that resulted from widespread misconceptions, from ignorance and from bigotry. To those who suffered, I say the people of Oregon are sorry, and our hearts are heavy for the pain that you endured.”
At least 2,648 people were sterilized in Oregon between 1917 and 1981, under the banner of "eugenics" which sought to breed a better human race by preventing those with traits they deemed undesirable from having children. The practice targeted a broad range of people including individuals with disabilities, criminals, promiscuous girls and homosexuals.
Sterilizations were legally authorized at Fairview Training Center, then called the State Institution for the Feeble-Minded, under a law passed by the Oregon Legislature which created the State Board of Eugenics in 1923. The Board of Eugenics was abolished in 1983. That's right, less than 30 years ago.
Today, we do not summarily castrate people with Down syndrome. Our policies, instead, encourage couples to forestall these individuals' existence altogether.
I am not writing this to challenge a woman's constitutional right to control her own body. But Disability Rights Oregon is dedicated to protecting the civil and human rights of individuals with disabilities. We must ask these profound questions: Who can legitimately place a higher value on one human life over another? What assumptions does a person make when deciding that a life is inferior? What role does the government (including the courts) have in encouraging, discouraging or even just recognizing the practice of disability discrimination, particularly when life is at stake?
Governor Kitzhaber is now back in office. He has put a halt to state executions of those convicted of aggravated murder. Perhaps it's time to re-evaluate how Oregon values the lives of individuals with disabilities.
Mar 10, 2012
The world didn't stop while DRO relocated two blocks to the west.
It’s March and in Portland and that can mean sheets of cold winter rain or brilliant blue skies that say spring is tantalizingly close. Both, really: sometimes one or the other every ten minutes.
Here at DRO, we are settling into new digs. After 18 years at our former location, we moved two blocks west to the corner of Broadway and Alder in downtown Portland. Our move was prompted by the need to find less expensive rent. Like many other publicly-funded programs, budgets are strapped.
Moving is always a challenge, especially after collecting 18 years worth of, uh, junk. It can be especially interesting for a program like ours that likes to settle into older office buildings which must be thoroughly accessible for clients, staff and visitors with disabilities. I’ve joked that we should move more often just to bring more old buildings into ADA compliance.
When we signed our last lease five years ago, we had no way of knowing that the Oregon legislature would decide to hold yearly sessions and it’s 2012 session would meet in February. We didn’t know that we would be in the midst of a major lawsuit seeking to enforce the rights of individuals with intellectual and developmental disabilities who want integrated employment. We also didn’t know that a few staff members would be grappling with serious health or family issues. We did know that the lease ended on February 29, 2012, Leap Day. Back in 2007, that date sounded peaceful enough.
But we did it! The phones, computers, servers, desks, chairs, books, files, bookcases, file cabinets, printers, plants, pictures, tables, lamps, appliances, and just plain, uh, stuff, made it with hardly any disruption in service. We’ve changed our stationery, business cards, and shortened our web address. The building has installed power door openers, a new elevator and is still making modifications to suit our needs. All the boxes aren’t empty but we’re getting there.
Meanwhile, the legislative session completed its work on major reforms to health care, education and early childhood services, passed a budget that avoided additional cuts to human services and declined to pass a few bills that would have eroded the rights of Oregonians with disabilities. DRO’s casework, litigation, outreach, training, benefits planning and information/referral services have continued unabated.
This is all to say that February presented DRO with many challenges. Our incredible staff, however, rose to the occasion. Long hours, a flurry of details and a variety of major stressors have been endured and overcome. What also endures is the skill of our staff, commitment to our clients and passion for DRO’s mission.
I say it often: it is a privilege to do this important work with our incredible crew of employees, volunteers and partners. Thank you.
Jan 16, 2012
What does being a person mean?
As part of my job here at DRO, I’m sometimes asked to speak to groups about the disability rights movement and how it got started. This is a much larger topic than I want to get into right now, but since I am sitting at home because it is a federal holiday honoring the birth of Martin Luther King, Jr., it seems important to note that the idea of disability rights is inseparable from the broader quest for human rights.
MLK is honored with a national holiday because he is a hero of the nation. He was a leader of a movement that spoke and continues to speak to the very nature of human experience. What is a person? What does being a person mean? MLK asked Americans to think about those questions and answer them honestly.
MLK’s invitation is still open. Today, you can ask yourself these questions. You can ask others to think about them.
We can also think about segregation and institutionalization. What fears or desires lead someone to demand the incapacity and impotence of others? Are those urges different when applied to affordable housing, the nation’s borders or the institutions of matrimony?
Looking back to April 16, 1963, we know what MLK had to say:
All segregation statutes are unjust because segregation
distorts the soul and damages the personality. It gives the segregator a false
sense of superiority and the segregated a false sense of inferiority. Segregation … ends up relegating persons to
the status of things. Hence segregation is not only politically, economically
and sociologically unsound, it is morally wrong and awful.
Letter From A Birmingham Jail
Freedom of religion trumps protection against discrimination. The lesson? Teach and promote disability rights in your congregation.
The US Supreme Count just decided that a teacher in a religious school may not sue the school for disability-based employment discrimination.
In Hosanna-Tabor Evangelical Lutheran Church and School v. Equal Employment Opportunity Commission, a long-time teacher experienced health problems that were diagnosed as narcolepsy. The disorder caused her to take a health-related leave of absence. When her doctor determined that she was ready to return to work, the school told her that her services were no longer needed. When she threatened to sue, the school issued a formal termination for doing so, stating that her actions violated the school’s religious doctrine of working out disputes internally.
The Supreme Court applied its “ministerial exception” which says the First Amendment’s freedom of religion provisions limit legal claims against religious organizations and their personnel. The question in this case was whether the teacher, Cheryl Perich, should come within the exception. She argued that even though she had the status of a “called” teacher who had some religious duties and provided some religious instruction, most of her duties were not religious and all of her job duties were performed by other teachers who are deemed “lay” and not considered ministerial by the school. She also argued that the school’s stated reason for firing her – her failure to resolve disputes internally - was a pretext for their real reason: disability-based discrimination.
The Court, in a 9-0 decision, did not agree with Ms. Perich. The decision said that it would not create a test for deciding when a person is a “minister” and can be discriminated against without interference by the courts. It was convinced, however, that Ms. Perich did fall into this category.
Since it appears clear that Ms. Perich was the victim of disability-based discrimination, does this decision allow religions to run roughshod over people’s human rights? No.
First, the decision notes that this decision does not say that religions are exempt from the criminal law.
Second, the Court discusses a case from Oregon in which the state denied unemployment benefits to a Native American who had been fired for ingesting peyote in a religious ceremony. In that case, the Supreme Court upheld the denial because the state law was a “valid and neutral law of general applicability” that “involved government regulation of only outward physical acts.” The case of Ms. Perich, “in contrast, concerns government interference with an internal church decision that affects the faith and mission of the church itself.”
Third, Ms. Perich’s claim that the reason for her firing was pretextual, “misses the point of the ministerial exception. The purpose of the exception is not to safeguard a church’s decision to fire a minister only when it is made for a religious reason. The exception instead ensures that the authority to select and control who will minister to the faithful—a matter “strictly ecclesiastical.”
Finally, the opinion wraps up by stating that it holds only that the ministerial exception bars a suit “brought on behalf of a minister, challenging her church’s decision to fire her.” It concludes: “We express no view on whether the exception bars other types of suits, including actions by employees alleging breach of contract or tortious conduct by their religious employers.”
In an interesting concurring opinion, jointly penned by a Catholic and a Jewish justice, it is noted that many religions do not have “ministers” and that many religious figures are not formally “ordained” or appointed. What matters to them is not, for example, Ms. Perich’s title, but whether she “played an important role as an instrument of her church’s religious message and as a leader of its worship activities.” If so, a religious body has the right to decide for itself whether an employee is religiously qualified to remain in office.
The lesson for disability rights advocates who are affiliated with religious groups is to become active within your congregation and religious organization to teach and promote the tenants of disability rights. Justice is not a matter for only the secular courts.
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