Home Care Aide Rules need to change

Funds spent for long term care initiatives

SEIU 775 Pushed for and Paid for each of these initiatives – Caregiving is still in crisis. Things need to change.

Several concerning issues regarding this case:

  1.  The Administrative Hearing Coordinator did not know the laws/rules of the HCA training.  He insisted several times that there was only one training course that the applicants could take – that of the Training Partnership (SEIU 775)
  2. The Administrative Hearing Coordinator insisted that there were not problems with others completing the training and getting their certification.  He treated this applicant as if she was a failure for not completing the SEIU 775 training.

HCA applications and certificates

Data for these charts was from the Credentialing Manager, Health Systems Quality Assurance, Washington State Department of Health

completed certification

The facts were provided to the Administrative Law Judge (ALJ) by the appellant.  While the ALJ had to abide by the Washington Administrative Code, she did fully understand the frustration and barriers for both the caregivers and those needing that care.

So, in the end, this was a very expensive and long drawn out ordeal that was frustrating but also clarified the problems with these rules.  Now we need people to help get the rules changed so that our community members in need of caregivers and those who want to provide this care can both get what they need.

Longterm care initiatives Washington state

SEIU 775 Pushed for and Paid for each of these initiatives clearly outspending the coalitions (or 501 (c)(3)) that were against each of these initiatives – Caregiving is still in crisis. Things need to change.

The Department sent the appellant the Planned Action Notice which outlined she had not completed the required Basic Training to be an individual provider.  The Appellant has continued working as an individual provider after January 25, 2018, and has not been paid by the Department.

Text from “Initial Order” signed by the Administrative Law Judge on July 23 2018 below:

The undisputed evidence established the Appellant has not completed the 70 hours of Basic Training to be an Individual Provider.

The Appellant explained she had difficulty finishing the Basic Training due to being locked out of the system at some point.  The Appellant expressed frustration about all the barriers in place to becoming an individual provider.  The Appellant also expressed frustration at not being informed about other possible ways to complete the Basic Training.

An administrative law judge may not find a Department regulation in the Washington Administrative Code invalid or unenforceable.  The authority of an administrative law judge (ALJ) and a review Judge is limited to those powers granted by statute or rule.  An ALJ and review judge do not have any inherent or common law powers.  (WAC 182-526-0216).  The Appellant made compelling arguments about the need for providers and how the process to become certified is frustrating because there are so many barriers.  The undersigned administrative law judge does not have the authority to grant the Appellant any relief or an exception to the certification process based on the need for providers in the community.  The undersigned administrative law judge also does not have the authority to implement basic policy changes to the certification process or great exceptions to the Basic Training requirement.

The Appellant has not completed the 70 hours of Basic Training within the 120 days of providing paid in-home care as an individual provider as required by WAC 388-71-0875.

Since the Appellant has not completed the required 70 hours of Basic Training, the Department was required to deny her payment as an individual provider pursuant to the Washington Administrative Code regulations.   There are not exceptions to completing the required Basic Training within the time frame outlined in the Washington Administrative Code.

Follow up:  the Appellant completed training through a DSHS approved  course

May 18, 2018 – sent application for HCA to Department of Health

July 25, 2018 – Completed the 75 hours of Basic Training

August 15, 2018 – DOH Credentialing scheduled caregiver for HCA test

September 7, 2018 – Caregiver took scheduled test – passed with 97%

September 19,. 2018 – DOH updated from PENDING to ACTIVE – FINALLY SHE CAN BE PAID TO PROVIDE CARE – even after she completed the training – the bureaucratic process to almost 2 months to complete – this was time that the caregiver had no control over yet she was not able to be paid. 

This caregiver is now providing daily care to two disabled university students.  

This situation was unusual in that the caregiver and her baby moved back into her parents home during this time.  Having the family support and “free” babysitting enabled her to continue providing care free of charge since most of her living costs were covered by her own self-employment and parents.  Without this support, she would have had to quit and become another one of those who applied to become an HCA but was unable to complete the SEIU 775 demands.  Caregiver provided care for 8 months without being paid.  Also the state had not paid her for the 2 weeks in January that she was locked out of the system.

Caregiver was not able to be paid by DSHS until September 19, 2018.  The rules state that the caregiver needs to complete the training and certification test.  Email from Case manager:

Planned Action Notice (PAN) that was sent to SG on 01/08/2018 informing her she would not be paid as of 01/25/2018. In the PAN, the WACs pertaining to the action are listed. WAC 388-71-0540 stipulation 14 indicates a provider cannot be paid if they do not successfully complete the certification requirements as described in WAC 388-71-0975.  SG was actually required to complete her HCA certification within 150 days of first starting to provide care.

The dates for completion of training and the HCA certification are based on when SG was first authorized to start providing care. SG was first authorized to start providing care on 09/28/2017.

Do You Need A Caregiver?

I and many others are well aware of the crisis that we have regarding lack of trained, qualified and committed caregivers for our community members in need.

Being aware of this crisis, I would think that the Department of Social and Health Services would want to work with their clients and independent providers to provide flexibility and alternatives so that the providers are able to complete the training.

In Washington State, independent providers can be hired by the disabled person and after having completed the 5-hour “Orientation and Safety” class, background check and fingerprints, may begin working.  They have 120 days to complete the remaining 70 hours of the Basic Training and need to have their Home Care Aide Credential within 200 days of starting to provide care.

While this may not sound difficult, in reality, many people are finding it impossible to complete for several reasons.

  1.  While working and providing care for the disabled person, the IP is also expected to travel to the SEIU training sites to attend the required evening classes.  For a person who provides care in the evening, this task is virtually impossible once caregiving duties have started.
  2. There is no “exception to rule” or extension available if unusual circumstances come up – such as family crisis, relocation, availability,  change in status.  DSHS has no flexibility for accommodations for IPs to get their training. 
  3. Even though there are alternative courses available through other DSHS approved training sites, IPs are not informed of these choices – even if they have difficulties with attending or completing the Training Partnership classes.

 

In order to be independent and involved in her community, Sarah needs to have reliable caregivers.  Sarah is able to self-direct but does need the caregiver to provide physical and personal care. Sarah had a terrific and experienced caregiver.  The restrictions of completing the 75 hour SEIU 775 training within 120 days of starting work has proven to be too restrictive for many people who have applied.

register through SEIU 775 site

This is the checklist from DSHS on steps to becoming an HCA – note that the ONLY training course information provided is the SEIU 775 training and a link to the SEIU 775 website.

The caregiver, having graduated from PIMA Medical Institute and having worked in an Internal Medicine Clinic as a Medical Assistant for 4 years in addition to having the experience of caring for her profoundly disabled younger brother, it seemed that she would fit into one of the categories that do not need to complete the full 75 hours SEIU 775 training by the criteria of “similar training”.

Unfortunately, a medical Assistant is not one of the jobs with “similar training” that is exempt from the 75 hours.  The caregiver decided that taking a Nursing Assistant  Course and becoming a Nursing Assistant – Certified (NAC). would be the best option for her.

This is where the whole issue gets more and more confusing and ridiculous when one just wants to do their job and provide appropriate and safe care to her employee.

DSHS sent a letter informing her that she would not be paid after 120 days due to not completing the SEIU 775 Training within that time frame.  DSHS sent the letter to an old address (even though they had been using her current address for not only her W-2 but other correspondence between the case manager and SEIU 775).  Due to this error on the part of DSHS, the caregiver did not receive the notice until the time limit to send an appeal had expired.  The caregiver had already taken steps before the deadline to become an NAC.

  1. January 18, 2018 – Application sent to Department of Health for Nursing Assistant Certification
  2. February 26, 2018 – appeal letter sent in to DSHS from caregiver regarding notice that she would no longer be paid since she had not completed the SEIU 775 training.
  3. March 13, 2018 – caregiver had discussion with the credentialing specialist at DOH who provided extremely useful information with some options available to gain certification.   She provided information  on the pending NAC if that was still a consideration.  (See note below) The information on the website was not totally correct with the processes and testing needed to complete the bridge program from MA to NAC and this lack of information was a barrier to completing this training.

Your Pending Nursing Assistant Certified (NAC) will stay pending for 300 days. At that time, you will be sent a 30 day warning letter. That gives you 30 days to respond letting us know if you would like to keep your NAC open. All you need to do is simply respond to that letter via email or by phone and we will extend it another 300 days. There is no limit to how many times you can extend it out as far as I know. This will keep your already submitted $65 payment and NAC application applicable to completing the NAC application process at a later date if you would like.

There is also a 24 hour bridge training program you can take after you have an Active Home Care Aide license as well. If you would like to pursue your Home Care Aide license for now and complete the NAC application process at a later date via bridge training, you would need to submit the following: (You’ve already submitted the application and $65 payment)

4.  April 9, 2018 – DSHS filed a Motion to Dismiss  claiming the caregiver had no right to appeal. A hearing was heard with the judge and the Department Administrative Hearing Coordinator – Mr. Korff.

5.  April 19, 2018 A pre-hearing appointment with the Judge and Department Administrative Hearing Coordinatore was set for

  • “Mr. Korff stated at the motion hearing April 9, 2018 that the Department first learned of my change of address on March 1, 2018 when they received my request for an appeal. I believe that the evidence I have provided indicates that the Department had my current and correct address on record as I was receiving mail and payments from November 2017.  I did my part and updated my address with the case manager and evidently there was a break in the system after that”

  • “I was working for free from January 26, 2018 and am currently still working for free for Sarah due to the fact that there are so few providers that are able to work and I do not want to leave Sarah without the needed care. My plan was to complete the certification for a CNA as soon as I could and then submit the license to DSHS and resume being paid for the care I provided.”

  • “I had sent in my appeal to the Office of Administrative Hearings with the hope of being able to extend my temporary status and complete the HCA training. My concerns I raised are appropriate and I believed that common sense and possibly an exemption to the rule could be used to enable me to continue the HCA training (at my own expense) and also be paid to provide care to Sarah”

  • “It has been clear by my actions that I have been attempting to accomplish training and complete the required steps in order to have a HCA credential and be paid for care-giving. It has been through a series of unfortunately timed events that I was unable to complete the steps in the required time set by the Department.”

  • “Things are again stalled due to the Department refusing to allow me to have an appeal and instead changing the hearing to a “prehearing conference”. There is still no decision on the part of the Department.”

  • Below are the actions that I am requesting:

    • I receive payment for the two weeks I worked in January, 2018 that I was unable to document due to being locked out of the IPOne system. (Allow me access to the system so that I can update it and submit my hours)

    • I would like an exemption to the rule of 30 days to appeal and to extend the temporary contract.  I would like an extension of 60 days which will give me time to complete all the required training for the HCA.

    • I would appreciate being paid for the time going forward while I complete my training (at my own expense) and continue to provide the caregiving that Sarah requires. I plan to have my HCA training completed within 60 days from now.  I would greatly welcome the opportunity to continue working for Sarah during this time but I also need to be paid for my work.

6. April 26, 2018 – Mr Korff objected to each of the 9 documents that appellant submitted regarding the Motion to Dismiss  on the grounds of relevance – stating all were irrelevant.

7. May 7, 2018 – Order Denying  Department  Motion to Dismiss issued –  Judge found the appellant’s request for an appeal hearing was timely.

8.  May 8, 2018, Caregiver submitted HCA Application to DOH  choosing to complete the HCA training at a DSHS approved training site rather than the NAC since it would be quicker at this point to complete and get the certification.

9. June 13, 2018 – Administrative Court Hearing with Judge and Department Administrative Hearing Coordinator, Mr. Korff.   Mr. Korff again stated that there were no other options to take the HCA training and that SEIU 775 was the only course available.

10. June 28, 2018 – Caregiver submitted documents to the Judge regarding appeal and request for extension as an exception to the rule together with  information from DSHS regarding alternative training available which the Department Administrative Hearing Coordinator denied existed.

 

To be continued –

 

SEIU 775 removes choice and limits access to care

Caregiving is in Crisis.  This is not news to anyone in need of a caregiver.

One would think that the Department of Social and Health Services and Advocates would be responsive to this crisis.  I have found the opposite to be true.  This past year I was witness to an incredible waste of time, energy and money by the Department  denying an appeal from a caregiver who only wanted to do her job for her disabled employer.

The problems are multi-faceted and intertwined but stem from DSHS giving power to SEIU 775 to control training and access to those interested in becoming a Home Care Aide (HCA) in Washington State.   SEIU 775 has removed choice for individuals.

There is history to the problems:

Initiative 1029 (2008)  –  Washington Long-Term Care Initiative

Initiative 1163 (2011) – Washington Long-Term Care Initiative

Quotes from one of the many articles written regarding I-1163 –

Voters, don’t be fooled. I-1163 represents the wrong priorities. Mandatory caregiver training and criminal background checks are already required by law. I-1163 costs $80 million in the next two years and benefits just one interest group — Service Employees International Union (SEIU).

This SEIU-sponsored measure claims to protect vulnerable adults. What it really does is force taxpayers to pay for the watered-down training of union members, with inexperienced and uneducated trainers managed by SEIU, eliminating the current training conducted by medical professionals and credentialed educators — who are licensed by the state.

How does SEIU propose to pay the $80 million price tag of I-1163? SEIU’s selfish, cavalier approach to the current budget crisis is unconscionable. Whose medical services will be eliminated to pay for I-1163? Whose school lunches do they intend to cut? Whose taxes do they intend to raise?

Taking Sides – The Herald

Then came the issues of Initiative 1501 in 2016.  Was the motive behind this Initiative for the benefit of SEIU 775 or the people receiving care?  It’s pretty clear to me that this Initiative had nothing to do with better training or access to care.

SEIU 775 was angry that the Freedom Foundation was informing Home Care Aids of their right to a choice – if they wanted to pay union dues or not.  Because of this SEIU 775 developed the initiative 1501 and promoted it as an initiative to increase penalties for crimes against vulnerable individuals – sounds good to me – but one needed to look behind what sounded good and understand the intention behind the initiative – to gain full control of access to care for vulnerable individuals by SEIU 775.

Intent—2017 c 4 §§ 8, 10, and 11 (Initiative Measure No. 1501): “It is the intent of part three of this act to protect seniors and vulnerable individuals from identity theft and other financial crimes by preventing the release of public records that could be used to victimize them. Sensitive personal information about in-home caregivers for vulnerable populations is protected because its release could facilitate identity crimes against seniors, vulnerable individuals, and other vulnerable populations that these caregivers serve.” [2017 c 4 § 7 (Initiative Measure No. 1501, approved November 8, 2016).]

Why is it that only the Home Care Aides License information on the Department of Health Professional License Registry is prohibited from being viewed unless one knows the exact name that the HCA is registered under?  Why not restrict EVERY type Healthcare License/Certificate if the real reason is to protect vulnerable individuals?  HCAs are not the only people involved in the care of this population – but they are the only healthcare professional that is required to be part of the union SEIU 775.

Debate on SEIU’s intents

SEIU 775 purple.jpeg

SEIU 775 is a union that represents longterm care workers, who provide care services in-home, in nursing homes, and adult day health services. The union sponsored Initiative 775.

The Freedom Foundation, a nonprofit free-market think tank, believed Initiative 1501 was an attempt to stop the organization from accessing the SEIU’s list of unionized caregivers to tell them union dues are elective in light the U.S. Supreme Court case Harris v. Quinn. Because the measure includes language stating “neither the state nor any of its agencies shall release sensitive personal information of… in-home caregivers for vulnerable populations,” the Freedom Foundation contended that access to the SEIU’s list of caregivers would be prohibited.[5]

The United States Supreme Court decided Harris v. Quinn in June 2014. In a five-to-four decision, the court struck down an Illinois law authorizing the SEIU to collect a “representation fee” from their in-home health workers’ wages to cover services the union is legally required to provide. According to the majority opinion, the law violated workers’ First Amendment speech rights to not provide financial support to collective bargaining. [14]

Through a public records request, the Freedom Foundation obtained a list of workers and encouraged them to stop paying fees to the SEIU. Adam Glickman, SEIU 775 secretary-treasurer, said his union was sustaining membership in 2015. He stated, ‘It’s hard to find other workers who aren’t CEOs who have seen their wages double.” Glickman also called the Freedom Foundation “radically anti-union.”[5] The Freedom Foundation, however, contends SEIU 775 has not done enough to inform their workers about Harris v. Quinn.[15]

SEIU 775 attempted to stop the Freedom Foundation from obtaining a list of its members in court. The union was unsuccessful, and the Freedom Foundation obtained a list of members in September 2016.[16] Glickman said the conflict had more to do with members “protecting their clients and protecting their own personal privacy and security from any number of organizations” than Harris v. Quinn.[3] Glickman claimed his union’s workers “wanted to take action to protect their privacy and the privacy of their clients.”[5] He also said language protecting caregivers’ “sensitive personal information” was included in Initiative 1501 because “there’s a loophole where any of these scams or telemarketers could get the names and contact information of the in-home caregivers”

In researching this issue – I was astounded by the amount of money SEIU 775 raised and spent.  I was not surprised by how many applicants failed to take the certification test – even though the Department representative on the appeal claimed there were not any problems and almost all applicants completed the certification.  Data from the Department of Health tells another story – to be continued. . .

 

 

Care-Giver Crisis – Here’s why

Disclaimer – I am not anti-union by making these comments but have concerns with how the union controls the Home Care Aides in Washington State.

As one who has had to rely on the independent direct care service providers (home care providers), I have been aware of the total lack of a qualified pool of employees and the restrictions in place that are prohibitive to alleviating the crisis.

Ten years ago in 2008,  Washington State passed Initiative 1029 which was sponsored by SEIU 775.  I was against this initiative for many reasons, many of which remain true today.  This legislation did not increase the pool of qualified caregivers but has made things much more difficult.  Many issues sounded good – such as more training for caregivers but there were too many strings attached which have actually made finding and keeping a care provider more difficult for families.

The requirements to become a Home Care Aid (ACA) are found here

The HCA checklist provided by DSHS is here

There are MANY problems with this process that make it impossible for people to get their HCA credential.

  1.  DSHS only informs applicants of the SEIU 775 training classes and actually tells people this is the ONLY training that is approved –
  2. The SEIU 775 training is very difficult to take while one is also working and may have childcare to consider and transportation issues.
  3. Classes of 3-4 hours a night, 3 nights a week may be impossible for many applicants to complete – this right here is a deal breaker.
  4. The time frame to complete the training and take the test is too restrictive with no alternative options.  If one does not complete the training by 120 days of application and one does not take the test within 200 days of application – there is no appeal, except to rule or extension available.  THAT’S IT – YOU FAILED!!

 

 

 

National Council on Disability – Employment

The Arc of King County has a representative, known to harass and bully disabled community members and disability advocates speaking as a panelist at the upcoming National Council on Disability Quarterly meeting.

Why is the Arc of King County enabling this abusive person to continue in this role?  Please contact the Arc of King County and ask why they encourage this type of behavior?

PLEASE NOTE CORRECTION SENT OCTOBER 22, 2018 FROM NCD REGARDING CALL-IN PHONE NUMBER – ALSO LIMITS ON PUBLIC COMMENTS – THEY ARE NOT TAKING COMMENTS ON EMPLOYMENT

We apologize for posting the incorrect call-in for tomorrow’s board meeting in our earlier email. Please note the change below.

**CORRECTION**

NCD’s Council Members will meet tomorrow, October 23, in Jackson, MS, to receive presentations on its latest report, “New Deal to Real Deal: Joining the Industries of the Future,” including a consumer panel to discuss it. A lunch break will follow that panel. Following lunch, the Council will receive a series of presentations from a bioethics and disability panel on the topics of genetic testing and gene editing, organ transplant policy, the use of quality adjust life years to limit healthcare, and physician-assisted suicide. Following a brief break, the Council will next receive a presentation regarding involuntary institutionalization as a result of disasters. The meeting will then include a time for public comment on NCD’s bioethics topics, before concluding with a brief period for any unfinished business.

This meeting will occur in Jackson, Mississippi at the Hilton Garden Inn Jackson/Downtown, Triple C’s: Club, Crown, Coronet, 2nd Floor, 235 W Capitol Street, Jackson, MS 39201. Interested parties may join the meeting in person at the meeting location or may join by phone in a listening-only capacity (other than the period allotted for public comment noted below) using the following call-in information:

Teleconference number: 1-800-667-5617
Conference ID: 6973399
Conference Title: NCD Meeting
Host Name: Neil Romano.

CART:
A CART streamtext link has been arranged for this meeting. The web link to access CART on Tuesday, October 23, 2018 is:
https://eur02.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.streamtext.net%2Fplayer%3Fevent%3DNCD-QUARTERLY&data=02%7C01%7C%7C7d1150d77ee243688cda08d6382a42b8%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C636758151489616659&sdata=qMb8Rlq3VyzCNmnOFNhNbAa1uV5%2BFHVtY2ZowthTxVA%3D&reserved=0.

Accommodations:
Those who plan to attend the meeting in-person and require accommodations should notify NCD as soon as possible to allow time to make arrangements. To help reduce exposure to fragrances for those with multiple chemical sensitivities, NCD requests that all those attending the meeting in person refrain from wearing scented personal care products such as perfumes, hairsprays, and deodorants.

AGENDA: The times provided below are approximations for when each agenda item is anticipated to be discussed (all times Central):

Tuesday, October 23

9:00-9:15 a.m.–Welcome and introductions
9:15-9:45 a.m.–Executive reports
9:45-11:45 a.m.–“From the New Deal to the Real Deal: Joining the Industries of the Future” national disability employment policy and  consumer panel
11:45 a.m.-1:15 p.m.–LUNCH BREAK
1:15-3:15 p.m.–Bioethics and disability policy panel
3:15-3:30 p.m.–BREAK
3:30-4:15 p.m.–Involuntary institutionalization as a result of disasters policy panel
4:15-4:45 p.m.–Town hall to receive comments about bioethics and disability (The five areas NCD is conducting research on include: organ transplants; medical futility; Quality Adjusted Life Years; physician assisted suicide; and genetic testing.)
4:45-5:00 p.m.–Unfinished business
5:00 p.m.–Adjourn

Public Comment:
NCD will receive public comments limited to those regarding NCD’s bioethics and disability research areas–organ transplants; medical futility; Quality Adjusted Life Years; physician assisted suicide; and genetic testing. To better facilitate NCD’s public comment, any individual interested in providing public comment is asked to register his or her intent to provide comment in advance by sending an email to PublicComment@ncd.gov with the subject line “Public Comment” with name, organization, state, and topic of comment included in the body of your email. Full-length written public comments may also be sent to that email address. All emails to register for public comment at the quarterly meeting must be received by 5  p.m, EDT, Tuesday, October 22, 2018. Priority will be given to those individuals who are in-person to provide their comments during the public comment period. Those commenters on the phone will be called on per the list of those registered via email. Due to time constraints, NCD asks all commenters to limit their comments to three minutes.

More Information:
If you have any questions about this meeting of the Council, please contact Anne Sommers at asommers@ncd.gov.

 

Screenshot (63)

Tune in on Tuesday, October 23, 2018 at 7:45 AM to listen to the panel (CALL-IN NUMBER:  800-667-5617, Conference ID: 6973399; Conference Title: NCD Meeting; Host Name: Neil Romano) have a discussion regarding

National Disability Employment Policy, From the New Deal to the Real Deal:

Joining the Industries of the Future

I am anxious to hear the comments of Shaun Bickley, representing Arc of King County, regarding his activism in Seattle which led to the elimination of the special certificates.

I wonder how Bickley will address the fact that he withheld critical information from the City Officials, falsified information, negated the research and report done by the National Council on Disability, bullied and harassed other disability self advocates and community members, refused to allow public comment on city websites of the Seattle Commission for People with Disabilities or that 7 of the 8 employees in Seattle personally affected by this law had their work hours reduced.

Will Bickley be accountable to the problems that have been raised by community members?

NCD Quarterly Meeting Agenda October 2018 – Shaun Bickley, Arc of King County, as panelist

I will be submitting a public comment – if you are so inclined to do so, the information from NCD is provided below.

 

 

PUBLIC COMMENT: To better facilitate NCD's public comment, any 
individual interested in providing public comment is asked to register 
his or her intent to provide comment in advance by sending an email to 
PublicComment@ncd.gov with the subject line ``Public Comment'' with 
your name, organization, state, and topic of comment included in the 
body of your email. Full-length written public comments may also be 
sent to that email address. All emails to register for public comment 
at the quarterly meeting must be received by Monday, October 22, 2018. 
Priority will be given to those individuals who are in-person to 
provide their comments during the public comment period. Those 
commenters on the phone will be called on per the list of those 
registered via email. Due to time constraints, NCD asks all commenters 
to limit their comments to three minutes. Comments received at the 
October quarterly meeting will be limited to those regarding NCD's 
bioethics and disability research areas--organ transplants; medical 
futility; Quality Adjusted Life Years; physician assisted suicide; and 
genetic testing.

If. . .

If I wrote this email or was a recipient, I would not want to discuss the deceit that was practiced in passing a discriminatory law either –  but I would hope that one would be interested in evaluating the process, the new law, how it discriminates those it should have helped and how to correct it.  Unfortunately, recipients contacted do not want to discuss the issues.

Dear Friends and Allies

 

Advocacy group appears to say persons with even the most profound intellectual disability may not need guardians — COFAR blog

I am sharing this blog post regarding issues of Guardianship and Shared Decision Making.  There are many concerns.

Surely, Shared Decision Making is an important tool to use with those who may need help with making life decisions.  In fact, most of us have some sort of informal set up of a shared decision-making network without really knowing it.  How many of us ask others we know before making a decision and do we seek out people who know about the issues the decision will be about?  Do we seek out people who know us or have an interest in our lives?

Shared Decision Making is assuming the person cares about making decisions.  If the person has no interest in making some decisions or has no understanding of the situation, how is that person going to be active in the decision making process?  In these situations, my assumption is that a guardian, who knows and understands the person best, is the person who should be helping the person make a decision.

A guardianship is a process that has gone through the proper legal, medical and social systems.  Yes, there are cases of abuse of the system but for many, it is the best and safest option to ensure a person has the optimal care and opportunity to make person-centered plans

 

We are questioning statements from a leading organization seeking to reduce or eliminate guardianships that imply that a guardian may not be necessary even for some of the lowest functioning people with intellectual or developmental disabilities. In an email to me on September 27, Dari Pogach, a staff attorney with the American Bar Association’s Commission on Law and Aging, […]

via Advocacy group appears to say persons with even the most profound intellectual disability may not need guardians — COFAR blog