A presentation to the NADD State of Ohio Conference Columbus Ohio September 20 2016 Michael Kirkman JD c Disability Rights Ohio 2016 Disability Rights Ohio Mission to advocate for the human civil and legal rights of people with disabilities ID: 553324
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Slide1
The Changing Role of Guardianship
A presentation to the NADD State of Ohio Conference
Columbus Ohio
September 20, 2016
Michael Kirkman, J.D.
(c) Disability Rights Ohio 2016Slide2
Disability Rights Ohio
Mission to advocate for the human, civil, and legal rights of people with disabilities
Federally mandated system to protect and advocate for the rights of all people with disabilities in Ohio
Previously, since 1975, Ohio Legal Rights ServiceSlide3
We envision a society in which people with
disabilities:
are full and equal members,
enjoy the rights of and opportunities available to all people,
are self-directed,
make decisions about where, how and with whom they will live, learn, work and play,
have access to needed services and supports, and
are free from abuse, neglect, exploitation and discrimination
.Slide4
Guardianship
Guardianship is an ancient device under the British common law to protect those who were considered property of the estate (seigneur).
Applied to children (bastards) and women
In modern times has been transferred to chancery or probate court jurisdiction
Conceptually, has not changed since ancient timesSlide5
Subordination theory
Modern (20
th
Century) thought has recognized the human and civil rights of children and people with disabilities
The current paradigm recognizes people with I/DD as fully realized citizens who have the capacity, with appropriate supports, to make decisions for themselvesSlide6
Rapid reform in Ohio
Dispatch series
AARP/ACLU/DRO attention
Advisory committee standards (2008)
Supreme Court rule (2014)
Bill of rights proposals in General Assembly (2014)
Congress / GAO attentionSlide7
Capacity
Guardianship uses a legal construct called “incompetence” which has little meaning outside of that context. R.C. 2111.01
Modern thought regarding protective services and guardianship recognizes that “capacity” is the critical inquirySlide8
Capacity, cont.
Legal capacity and functional capacity are different concepts
Capacity to make a specific decision is based on the context for that decision, e.g. medical consentSlide9
Capacity, cont.
Current law requires that functional capacity is the standard against which the person’s rights are measured
Presumption is in favor of the person’s ability to make his or her own decision
In some circumstances, particularly in highly protected contexts, that presumption may be
irrebuttableSlide10
Legal Capacity
“A
New Paradigm for Protecting Autonomy and the Right to Legal Capacity” (http://www.lco-cdo.org/disabilities/bach-kerzner.pdf)
Legal
capacity or “presumptive” capacity.Slide11
Legal Capacity and the ADA
Effective
communications and reasonable accommodations provisions of the ADA come into play
All persons with disabilities are presumed to have capacity to make decisions affecting their lives
The critical inquiry is what accommodation is reasonable to allow the person to make their own
decisionsSlide12
Legal Capacity and the ADA
Examples of accommodations
Person
centered planning
Supported decision-making
Dinerstein
,
Implementing Legal Capacity Under Article 12 of the UN Convention on the Rights of Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision Making,
19
Human Rights Brief 8, 10 (Winter 2012).
Ross v. Hatch
, Virginia Circuit Court for the City of Newport News (August, 2013)
In re Guardianship of
Dameris
L.,
38 Misc. 3d 570, 580 (N.Y. Surr. Ct., N.Y.
Cnty
. 2012)
Circle of FriendsSlide13
Regulatory Framework - internal
AIDD – projects of national significance
National Guardianship Association Standards
UN Convention on the Rights of People with Disabilities
State law, including Court Rules, Attorney General GuideSlide14
Applications
Guardians
advise and discuss. As a surrogate the guardian is limited in what types of activities it can make decisions
Inherently personal decisions are not allowed, e.g. voting, marriage, certain reproductive rights issuesSlide15
Applications, cont.
Guardians do not have the authority to require services that are not in the medical interest of the client
Is the provider willing/able to enforce the rights restriction
Does the provider feel confident enough to say “we can’t enforce that”
Guardian can only consent or withhold consent, cannot compel services that conflict with regulatory environmentSlide16
Applications: Voting
“[T]he
connection between cognitive diagnosis and capacity to vote is often
weak…”
“
cognitive condition rather than capacity to vote” is often the basis for
disqualification”
“
capacity-testing only for people with cognitive impairments would indirectly introduce” status based disqualification, and even universal testing could be “perilously close to the introduction of literacy tests
….”
Beckman
, The Accuracy of Electoral Regulations: The Case of the Right to Vote by People with Cognitive Impairments, Social Policy & Society (2014) 13:2, 221-233 at 221. Slide17
Applications: Voting
“The focus should be on maximizing access to voting and maximizing assistance for people who need it” Dr. Jason
Karlawish
Leonard, Health: Keeping the ‘Mentally Incompetent’ From Voting, October 17, 2012, http://www.theatlantic.com/health/archive/2012/10/keeping-the-mentally-incompetent-from-voting/263748/Slide18
Applications: Voting
[O]
ur
political discourse, for better or worse, bypasses the conscious mind altogether, and that a large number of citizen views and choices are driven by a range of irrelevant factors and fortuities-such as a candidate's height, whether he uses a nickname, or the format of the ballot
.
Karlan
, Framing the Voting Rights Claims of Cognitively Impaired Individuals, 38
McGeorge
L. Rev. 917, 917 (2007)
/Slide19
Applications: sexuality
All institutions that isolate people as social or medical problems have an enormous aversion to dealing with issues of sexuality.
“Dancing in the Sky Without a Parachute”: Sex and Love in Institutional Settings
,
Susan
Stefan Esq.
A survey of LTC providers showed that only 25 to 30 percent had formal training “in the area of intimacy and sexuality,” and 30 percent had no training
at all.
Can A Person With Dementia Consent To Sex?
http
://
www.npr.org/sections/health-shots/2015/04/22/401470785/can-a-person-with-dementia-consent-to-sex
(viewed 4-26-2016)Slide20
Love in the Fog: The Case of John O’Connor
Married to Supreme Court Justice Sandra Day O’Connor, he suffered depression and declining physical health when
moved to a
facility, until he met and fell in love with another resident.
Sandra O’Connor has allowed the story to be public to draw attention to the issue.Slide21
John O’Connor, cont.
“When
dementia is involved, reactions that apply in the outside world become inapplicable
.”
http://
www.theguardian.com/society/2007/nov/30/mentalhealth.g2
Slide22
Every Day isValentine’s Day
''We understand that sex is the outgrowth of intimacy, affection and caring,'' said Daniel
Reingold
, executive vice president of the Hebrew Home. ''Our goal is to encourage those emotions while also being aware of the rights and safety of others.''
In 2004, the nonprofit
1,100-resident facility went a step further, creating ''Freedom of Sexual Expression: Dementia and Resident Rights in Long-Term Care
Facilities”
http://
www.nytimes.com/2002/06/04/health/at-elders-home-each-day-is-valentine-s-day.html
Slide23
Federal law
Medicaid and Medicare - Standards of Care create a right to private visits, to have private visits of the resident’s choosing, and to share a room with your spouse. These
laws emphasize respect, privacy and
self-determination.
Resources
https://
www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf
https
://
www.medicare.gov/what-medicare-covers/parta/rights-in-snf.html
https://
www.lambdalegal.org/sites/default/files/publications/downloads/fs_nursing-home-residents-rights.pdf
Slide24
Federal law, cont.
Medicaid and Medicare - Standards of Care create a right to private visits, to have private visits of the resident’s choosing, and to share a room with your spouse. These
laws emphasize respect, privacy and
self-determination.
Resources
https://
www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf
https
://
www.medicare.gov/what-medicare-covers/parta/rights-in-snf.html
https://
www.lambdalegal.org/sites/default/files/publications/downloads/fs_nursing-home-residents-rights.pdf
Slide25
State Law
Rev. Code 5123.62: Rights of persons with a developmental disability
Privacy, including periods and places
Social interaction with members of either sex
Treated equally as citizens under the law
Rev. Code 3721.13: Residents’ rights (nursing home)
Exercise all civil rights
Private visits
Private visits with spouse
Doors closed and knock before enteringSlide26
International Law
UN Convention on the Rights of Persons with Disabilities
Signed by U.S. but not yet ratified
Art. 23: eliminate discrimination . . . in all matters relating to marriage, family, parenthood, and relationships, on an equal basis with othersSlide27
Rights reserved
Ohio Guardianship Guide
Right to privacy, including privacy of the body
Exercise control over all aspects of life not delegated to the guardian
Marriage, procreation
Guardian may not have authority to waive/diminish rights
Rev. Code 3721.13(C): any attempted waiver is voidSlide28
Next steps
Uniform Guardianship and Protective Proceedings Act
Implementation of Supported Decisonmaking modelsSlide29
Questions?
Disability Rights Ohio
614-466-7264 or 800-282-9181
TDD 614-728-2553 or 800-858-3542
614-644-1888 (Fax)
50 W. Broad Street, Suite 1400
Columbus, Ohio 43215-5923
disabilityrightsohio.org
https://www.facebook.com/DisabilityRightsOhio
@
DisabilityRtsOH
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