Kevin is trapped!

Many have been following the issues of those with IDD who have been dropped off and abandoned by their group homes into the hospitals.  This is not a new issue but one that has finally been acknowledged as happening.  We need a solution  – NOW

Recently, Keven, our 26 year old friend has been “on hold” in the Emergency room at St. Joseph’s Hospital in Bellingham, WA.  I sent an online complaint to the Washington DD Ombudsman and maybe the more complaints they receive, the better the chance at a positive solution – not only for Kevin but for others.

Here is the information that I submitted on my complaint – feel free to submit your own complaint regarding the issues that are happening. DD Ombuds complaint submitted May 6 2019

Today, Kevin’s mom informed me of the following information she received:

Kevin’s situation…

This afternoon after visiting Kevin at St. Joseph Hospital, I was told that if he attempts to leave the unit (SECU).

.. they will let him leave the hospital and 911 will be called.

When is this nightmare going end??

 

 

Kevin has been stuck in the hospital for 31 days – and counting

Kevin has been in St. Joseph Hospital for 31 days

My son Kevin is a 26 year old man with severe autism and he is developmentally delayed (around 5 years old developmentally). Kevin has been in a Bellingham group home for the last four years (Access Living). Before that, he was a resident at Fircrest RHC in Shoreline for five years. For the last six months Kevin has been having behavioral problems. His psychiatrist attempted to adjust his medications with no positive results. Now we know the behavioral problems were the result of increased ammonia levels due to a couple of his medications. For months he has been frustrated, sleeping all day and awake all night. Kevin has a history of poor self-regulating skills and can lose control and throw a tantrum when under stress. He is 6′ 2″ and during these instances he can harm those around him. My son has assaulted his caregivers and his roommates several times in the last six months. Each time the police were called and he was handcuffed and sent to the ER at St. Joseph Hospital. Once the crisis is over, promptly he feels bad and goes back to being a kind, loving child.

In November he was at the hospital for five days due to self-harming behaviors and hitting one of the caregivers. Again in January 7th he became anxious and hit a caregiver and a wheelchair bound roommate. Police were called and Kevin was taken to the ER. He was transferred to SECU in a room with another four patients. This unit is an extension of the ER, where patients with violent behaviors are placed on hold. Definitely not a good place for an autistic individual due to the loud screaming and the aggressive behaviors of patients around. When I went to the hospital he was crying, very scared, and asking to go home. I took him home with me and when I called his group home the next day, they let me know that he was not allowed to come back to his house. (Access Living wants to work with us and is attempting to rent a new house where Kevin can have his own space).

Kevin was with his father and I for two days as we were attempting to take care of him in our home until a new living situation was arranged. Sadly, he became agitated the third night because he wanted to go to his home in Bellingham. After he threw chairs and pushed his father and I, sadly we were not able to help him settle down. We were forced to call 911 at he was taken to the hospital again. He was in SECU that night and the next day he was transferred to a medical care unit. He has been there since the 10th.

We have been trying to get help from DDA but they have no answers. I contacted the admissions office at Fircrest on January the 11th and was informed that there was a great chance of them to accept Kevin on one of their respite beds since he was a Fircrest resident in the past. I informed Kevin’s care manager, but he let me know that it was out of his hands and the paperwork needed to be reviewed first by a DDA committee in Everett. It took from January 10th until February 4th for the file to be sent to Fircrest to apply for a respite bed. I called the person in charge of Kevin’s case in the Everett DDA office on 2/5 and he let me know that there are no respite beds available “anywhere” for my son at this time. We are desperate at this point, as the hospital is not the best place for an individual like Kevin.

St. Joseph Hospital staff have been great with my son (I work on the same floor as a floor RN), but Kevin will be better served in a place where he can go outside for walks and have more freedom to ambulate. He is in his hospital room 24/7 and this is harmful to his mental/emotional stability. The only good news is a new psychiatrist who is an expert on autism took Kevin’s case and she has changed his medications due to toxicity found in his blood work. We have already seen remarkable positive changes in his behaviors but the last four days he has started to do self-harm due to the stress of being confined for such a long time.

We feel helpless and discouraged since we are not able to help our child. Putting Kevin through this experience is wrong! More has to be done to help DD patients and their families during crisis situations like this. Please feel free to share our story, Kevin deserves better from the system.
Marcie Alspaugh

Addendum:  Video from June 2014 with footage of Kevin while he lived at Fircrest – Kevin is seen at 1:12 and 1:26 in this short video:

#Olmstead – get the real scoop

There has been a recent buzz on twitter and Facebook and probably other social media regarding a comment made by Mary Lazare, Principal Deputy Administrator for the U.S. Department of Health and Human Services’ Administration for Community Living,  at the recent Autism Society’s national conference.

The comments, which are only reported by 3rd party accounts, alleged that Ms. Lazare straight up came out in favor of re-institutionalization and in favor of segregation.  This is extremely hard to believe given the history of the organization.  Ms. Lazare did send an apology via Twitter in which she does recognize that Olmstead does give people the right to choices.

tweet @ACLgov

It is extremely disturbing to read in Disability Scoop that lawmakers are so uninformed about what Olmstead really says.  “Olmstead “has nothing to do with maintaining choice and everything to do with viewing the segregation of people with disabilities as a violation of Title II of the Americans with Disabilities Act,” wrote the three House lawmakers in their letter.”

Mary Lazare twitter response

It is obvious that these lawmakers have not taken the time to actually read Olmstead or they could never have gotten that opinion.  They are just taking the word of others who have misinterpreted Olmstead for years.

One reason false information is repeated and then taken as fact is because those who do not like what it says, block people who question them.  This group becomes insular in their ideology – they don’t want to have anyone raising questions against what they want to believe.  There is no voice of reason and common sense because these activists have blinders on and are hidebound.

Olmstead is about choice – not your choice, my choice but the choice of the individual.

 

 

ASAN misunderstands Guardianship

There was a recent article by Amy  S.F. Lutz in Spectrum News regarding the freedom to chose where one wishes to live.   The article was excellent but also of interest to me was the arguments that ensued in the comments.

It is clear that ASAN (Autistic Self-Advocacy Network) does not understand Guardianship – both how it works and what it is – in this Easy Read Edition  of “The Right to Make Choices” that describes guardianship.  This makes guardianship seem as if the guardian owns and controls every aspect of the person served by the guardianship.

There are several issues that ASAN needs to understand regarding the differences and similarities between supported decision making and guardianship.

  1.  A person is not “put” under a guardianship – there is a choice made in the beginning of the process and one has the choice if they want a guardian or not.  Some people do make the choice they want a guardian and choose that person.  Some people say “no” and that choice is honored.   ASAN seems to miss this first step in a guardianship process.
  2. Guardianship is a legal contract of a choice that has been made.
  3. A person with a guardianship is allowed to vote – guardianship does not remove that right.
  4. ASAN states “Legal adults do not have guardians” and “Legal adults make their own choices.”  Are they saying that those with a guardian are not adults, not legal or what does this even mean?  When Do You Become an Adult may provide some of the answers or it may make it more confusing.
  5.  According to ASAN, Texas is the only state that has laws for supported decision making.
    • Courts have to think about supported decision making options for you before they can assign you a guardian
    • Guardianship is the final option if supported decision making does not work
    • An adult with a disability signs a supported decision making agreement – this is legal as long as the person with a disability UNDERSTANDS the agreement
    • You sign the agreement in front of witnesses.

An example of Supported Decision Making can be seen in this terrifying situation (at least terrifying to me – it may look like independent choice making or supported decision making to some self-advocates though and heralded as “success” for this man).

I have a questions about accountability and responsibility with supported decision making.  Since there are no laws (except in Texas apparently) regarding supported decision making, I have great concerns about safeguards to prevent abuse and vulnerable people becoming targets of predators.   Since supported decision making occurs without any special legal process, who is accountable?  A person who has not attained some developmental steps in the natural process called life, cannot be held accountable for decisions and actions which they do not understand.

I am the guardian of my adult son who happens to have intellectual and developmental disabilities and a shizoaffective disorder.  When he was asked by the Guardian Ad Litem  if he wanted me as his guardian, he said “yes”.  He made that CHOICE which states he wants me to make decision for him that are in his best interest that he is unable to make.

ASAN and every other organization or advocate that says he is being controlled and I make every decision for him are not living in reality.   Sara Luterman has made huge assumptions regarding the parent-child relationship and that of guardianship.  She writes “They do not believe that their children are capable of having opinions about any serious or real issues. They see their children as extensions of themselves, rather than distinct human beings.”

My son is far from a puppet for me – he is is own person with very distinct opinions and is very clear about what he wants and doesn’t want.  There are also areas of life that he clearly has no ideas about – for instance managing any healthcare issues, money or safety issues.  He is unable to call for help if he is in trouble.  He is unaware of unsafe conditions and hazards in the community.  Just because I am his guardian, who he chose to make some decisions for him, does not mean that decisions I make are what I want. The decisions I make for him are decisions that are in his best interest.

 

 

 

Congregate is not the same as segregate

I am very disappointed with the Joint Position Statement published June 23, 2016 by The American Association on Intellectual and Developmental Disabilities (AAIDD) Association of University Centers on Disabilities (AUCD).

While there is quite a bit of quality information in this statement it is obviously clear that these organizations also have a strong bias against choice of residential settings.  It is unfortunate that these organizations do not understand that congregate care is not the same as segregated care.

“Everyone with an intellectual or developmental disability deserves to live in the community where they have the opportunity to experience vibrant lives that include work, friends, family, and high expectations for community contributions.”  These goals can and are also accomplished in congregate and campus type communities.

Many states have built systems that utilize group homes as a key way to support people in the community. When people find themselves in a situation where they need to live outside of their family home, they are often placed in an “open bed” versus being offered person-centered supports designed specifically to meet their needs. In many of these situations, people remain as isolated in these settings as they do in a large-scale institution. A process for creating and sustaining supports that make their living situation a home in a neighborhood is needed.

It is clear from the above statements that these organizations realize there is a problem with the funding and system that many supports are built around.

Yet AAIDD and AUCD are doing exactly what they chastise others for doing – categorically denying the individual the personal choice for individualized care in the residential setting they choose.  The setting is not what necessarily causes the segregation – separation from familiy, friends and community causes segregation.  Unfortunately that segregation can happen in any residential setting.

It is the segregation that needs to be called out – not the setting.

 

 

Not Just the Next Empty Bed

Recently we moved our son from the intermediate care facility to a home in the community under a supported living arrangement.  It was a difficult decision to make given all the research that I have done regarding care and oversight.  Many people wrote to me telling me of the terrible decision I was making and with horror stories of things that had gone wrong in the community.  I was well aware of many of these issues and still am aware of the lack of choice and quality of care that is offered in many settings.  I am aware of the cost issues and the cost-shifting that occurs making it appear that care in the community setting for those with complex care needs is less than the cost of care in the ICF/ID.

But, there were some circumstances that necessitated this move – a move that we thought we would not be making for a long time – namely that the ICF/ID was not able to provide the prescribed medical and nursing care that my son needed and his health was in danger.  There had been charges of medical/nursing neglect, many medication errors, and other issues related to personal and healthcare concerns.  The ICF/ID healthcare providers refused to follow the prescribed treatments of my son’s medical specialists and I was forbidden to teach nursing or personal care staff how to administer special medications or how to apply his splints correctly.  My hands were tied  due to the inability of the facility to acknowledge problems – not one specific problem but many.  I needed to visit several times a week in order to do his nursing care while at the same time being told that my visits were doing him a disservice.

But, my son had one option in this that most other people do not have – the option of CHOICE.

While on the wait list for the Roads to Community Living grant I was able to try to maintain my son’s health until we were able to choose a home that would work for him.  We had specific criteria – number one being that he needed to remain in our local community, the one in which he grew up and in which the ICF/ID was also in.

Of course, the supported living agency had to choose my son first before he could choose them and that took over a year and probably 8 rejections from local agencies.  When Alpha Supported Living Agency said they could support him, it then took time to hire and train staff and planning for which house would work best for him given the mix of the residents.

One of the major reasons that my son had this choice was due to the fact that he had continued to live in our local community and we involved natural supports to help with his care and community integration. He did not have to take the “next empty bed” as his choice for this move (that was how he got into the ICF/ID to begin with)

We are so thankful for this opportunity and my son’s health has greatly improved since his move and he has blossomed in many other areas too.

It is my assumption that many problems that arise from community residential services is that “the next empty bed” is the only choice available.  This is not a system which supports person-centered choice or real community.

There needs to be changes and more alternatives for true choice – from congregate, campus based care to individual homes – as long as the person is appropriately supported one can have a very meaningful life. Many times this takes much collaboration and team effort and adequate funding to support – but it can be done.

Please check out The Autism Housing Network for and ideas on how to increase choice and alternatives for adults with intellectual disabilities.

Disability Rights Washington has filed a lawsuit against Washington State Department of Social and Health Services and the Washington State Health Care Authority to help speed up transition and provide supports in the community.  My son is a member of this class-action lawsuit although I was not aware of it until it was made public this week.

Letter from DRW to DSHS and HCA

DSHS and HCA response letter