SAIL – (Self Advocates in Leadership) is The Arc – Washington State

I have had issues with the group SAIL – Self-Advocates in Leadership (Washington) for some time since I have witnessed this group dis-regard self-advocates who may not agree with the agenda of this group.  SAIL has typically had a representative testify every year to various committees in Olympia claiming that all institutions should be closed.   SAIL has had consistent messages that oppose person-centered planning with regards to choice of residential setting.  This group claims to represent ALL people with disabilities and fails to understand the heterogeneous make up of this population.

This past year the previous Self-Advocacy Coordinator  who actually worked for the Arc of Washington (Noah Seidel) took a position in the Washington State Developmental Disability Ombudsman Office. SAIL did not renew their non-profit status with the Washington State Secretary of State and the organization non-profit status expired February 28, 2017 and  SAIL administratively Dissolved  as of July 3, 2017.

SAil is not registered with Wash state

Facebook clipping dated August 28, 2017

The Arc – Washington State posted a Job Announcement for Self-Advocacy Coordinator on September 19, 2017

Sail Coordinator

Self-Advocacy Coordinator – The Arc – Washington State

SAIL is now run by The Arc – Washington State and the new Self-Advocacy Coordinator is Cheryl Monk.  SAIL is not an independent organization managed and lead by people with developmental disabilities as many are led to believe but is some sort of committee within The Arc- Washington State.

SAIL coordinator Cheryl Monk

 

There are other Self-Advocates in our state that do not promote the same agenda as the members of The Arc – SAIL.  These self-advocates have a variety of experiences and want to preserve choice for everyone.

One such self-advocate is a young man who lived at Fircrest for 6 years.  He moved to supported living during March 2016.  Even though he has a guardian, it was his choice to move and he has worked with his residential team, community, family, friends, employer, job coach and healthcare providers to make this transition a success.  The supports are critical for him to remain in supported living and the collaboration is essential to make it all work.

But he hears things and picks up on what goes on in the community.  When he hears news about Rainier or Fircrest closing, his anxiety spikes.  While at Fircrest he heard talk about this very often and he had lived at Frances Hadden Morgan Center prior to it’s closure – an experience that was traumatizing for many.  The threat of losing his home again was a real threat while he lived at Fircrest.

This is his message to our legislators – he will not be testifying as a self-advocate in front of legislative committees but his message is just as important as those who belong to The Arc – Washington

 

Addendum:

This post has offended some self-advocates.  The militant activism by some DD Self-Advocates is cause for concern.  The lack of ability to understand that others have different needs and desires, that caregivers, friends and family members of those who require intensive and extensive support needs are valuable as advocates for the people they support are major problems.

It’s very unfortunate that those self-advocates who refuse to collaborate with other advocates have a persecution complex against those who advocate for better services and the funding to support those services.  Those who advocate with and for people with IDD are not advocating from a “pro-institution” position but from a “pro-person centered planning” position.  There is no ulterior motive to pit one group against another – we’re all in this together.

Ivanova says I am wrong about The Arc

SAIL – Self Advocates in Leadership

SAIL headerWe hear much about Self-Advocacy and there are many trainings out there for people to learn to become self-advocates.  This is part of becoming more independent and able to make choices.  Yet, these trained self-advocates are only a minor part of the population of people with intellectual and developmental disabilities.

The agenda of many of these self-advocacy organizations may actually be against services and choices that many of their peers would advocate for.  The problem is that the peers who are not involved in these self-advocacy trainings (for a variety of reasons) are not able to communicate thier needs and choices in a typical manner. Therefore, the majority of people with intellectual and developmental disabilities are not represented by these self-advocacy groups.

 

Sail 2018 legislative agenda

When trained self-advocates voice their agendas and state that this is what people with IDD advocate for, they mislead our legislators and policy makers.

Again, it is important to understand the disability of intellectual AND developmental disabilities – by the very nature of the disability the people affected by it are, in most cases, unable to communicate their needs and choices to those who do not know them.  The people with IDD may not even be aware of or care about the issues that the trained-self advocates choose to concentrate on.

Yesterday I decided to take my son to a SAIL (Self Advocates in Leadership) meeting in Seattle.  My son is aware that I go to our state capital and communicate with people in our government.  He is aware of some of the names that he hears me say and gets excited when I say I am going to meet with one the legislators he has heard of.

I told him that we were going to a meeting for people with disabilities.  I have no idea if he understood what I was even talking about because he doesn’t really consider himself “disabled” or needing any type of special adaptation or accomodation.   He knows that he’s not able to do some things that his siblings do – such as drive  – but he’s totally fine with that and if you asked him if he wanted to learn to drive he would crack up laughing.   My son accepts how he is and is happy.  He has been disabled his whole life and his reality is that he does things differently than his typical siblings.  He is aware that his siblings do things that he doesn’t do  – but that’s totally okay with him becuase he is able to do the things that are important to him.  In that respect, they are all the same.    He is extremely happy with his life!

So the topics and discussions at the SAIL meeting were of absolutely no interest to him. Due to the length of the meeting and total lack of interest on my son’s part, we did leave the meeting early since it was also clear that his noise level and interest in other things besides what was being discussed were extremely distracting to at least one of the speakers.

One speaker, who happens to be on the Seattle Commission for People with Disabilities, appeared very disturbed by my son.  The speaker had to stop and complain several times to one of the meeting co-chairs about the distractions and even said that he could not talk with such distractions.  After about the 4th time this speaker started to talk it was very clear that he was getting agitated by my son’s noise but the co-chair told him to just keep talking and not to worry about the “distraction” (my son’s noise)

When my son kept trying to look at his You-tube videos or listen to Pandora or ask Siri about various people he knows, he would either get very excited and laugh or get angry with me for trying to encourage him to be quite.  He then started focusing on the time and saying “we will leave at 3 o’clock” for about 45 minutes and then we did leave at 3 PM.

It’s too bad because I think SAIL did discuss a topic that my son does have an opinion about – that of the intermediate care facility.  He is adament about these communities staying open and providing homes and care to those who need to live there.  This is something that he does understand from his experience – an experience that most in that room did not have – or at least not in recent years.

My son shows great concern about Fircrest (the ICF/ID in our neighborhood and where he lived for 6 years) closing.  He can name the other Residential Habiliation Centers in our state that are often in the news with regards to funding cuts and closure.  He did live at Frances Haddon Morgan Center (FHMC)for 1 year but was able to move to the RHC in our neighborhood prior to the closure of FHMC.  My son often asks “What happened to Frances Haddon?”

It is clear to me that this self-advocate meeting was meaningless to my son yet he is one of the many who need advocacy.  It’s shameful that the agency that is geared towards self-advocacy is unable to accommodate the needs and opinions of those who most need an advocate and fail to see the broad spectrum of needs and choices of the population.

I’m really curious how these self-advocacy groups work with people similar to my son and how they reach out and learn what issues are important to them?  Or is this population forgotten and silent when it comes to advocacy?

 

 

 

“Take your opinions elsewhere”

NOS Magazine recently published an opinion piece written by Ivanova Smith regarding the issue of “Mental Age Theory”

NOS Magazine

One would think that being a magazine devoted to neurodiversity and open to “publishing opinions from many corners of the neurodiversity community” that censorship and blocking participation from advocates in discussions is counter to the mission.  Apparently, only those neurodiverse in the “right” way are allowed to comment and exchange opinions or answer questions from others.

Saskia Davis, published  her thoughts about the article above on NOS Magazine.  There was a follow-up comment to which Saskia wanted to reply and it was then that she realized that her post had disappeared and her reply was not able to be posted either.

I offered to publish Saskia’s responses on this site because I think they are worthy of being read and understood.  The first comment can be read on Developmental Disabilities Exchange.    The follow up comment is below in this post.

NOS banner

NOS Magazine is a news and commentary source for thought and analysis about neurodiversity culture and representation. Expect long form journalism, reviews of pop culture, and more. NOS stands for ‘Not Otherwise Specified,’ a tongue-in-cheek reference to when a condition does not strictly fit the diagnostic criteria, or is in some way out of the ordinary.

Opinions: Not Otherwise Specified

Stories: Not Otherwise Specified

Perspectives: Not Otherwise Specified”

NOS Magazine is a publication for the neurodiversity community. As such, people who identify as a part of the neurodiversity community and/or who are neurodivergent in some fashion will be given publication preference in order to ensure that this publication is a voice of the community. We recognize and respect self-diagnosis as valid and do not have a standard of who is “disabled enough” to count.

Opinion

Published pieces are not necessarily the opinion of NOS Magazine. We are open to publishing opinions from many corners of the neurodiversity community.

 

Responding to: (from Saskia Davis)
Ivanova Smith
September 11, 2017 at 7:25 pm
“I going to share some examples people can to explain their love one support needs that don’t use mental age theory. I some people being asking me for alternatives……..” (http://nosmag.org/mental-age-theory-hurts-people-with-intellectual-disabilities/

I wrote:
“These are helpful suggestions.  How would you help a person understand the level of constant,  total care that is required for the support of someone who lacks the capacity to make safe decisions, lacks verbal ability to express what is wrong, and what s/he wants,  but has enough, almost understandable vocabulary to  frequently repeat the same few phrases,  can’t safely mobilize herself anywhere,  is absolutely distractable, and doesn’t  care to focus on anything except neckties or hats or cars, will choke due to putting food in her or his mouth before swallowing the last bite  if allowed to self feed, except that is impossible because s/he can’t load her own spoon, but can hold a glass and will choke if not dissuaded from laughing during drinking, while self-feeding, gets food all over her/his face,  body and clothes, laughs with delight when something or someone  falls on the floor  and finds it great fun to empty surfaces of their contents to see them fall,  or someone who can carry on a delightful, if limited conversation  but, who, if asked questions  or when another person  wants his food  or when he can’t have food from someone else’s plate, will throw a 20 minute  tantrum just like those that two year olds throw,   (only this person is 6 feet tall and weighs 160 pounds)  hollering, throwing himself on the floor, writhing, kicking screaming, hitting, biting, and who   has been unable to learn to tie his shoes or put them on the correct feet and who remains incontinent at the age of 21 despite many patient years of family members and caregivers’ attempts to help him achieve continence. In few enough words so that the reader or listener will stay engaged to understand the other points you are trying to make, how do you give a picture of such a person that allows another  to understand the intensive level of care  and careful planning for support that is needed and the struggles the person endures in order to make progress?  Thanks in advance for your suggestions.”

 

The title of this post is a quote from Sara Luterman, editor of NOS Magazine in answer to my question regarding removal of my own posts.

Mental Age?

Motive asymmetry – the belief that one groups motives are driven by love, care and affiliation and the rivals are motivated by the exact opposite.  This term is generally referred to with regards to political conflict but I see fully activated in the issue of advocacy for those with intellectual and developmental disabilities.

It feels to me that motive asymmetry is at play with regards to trained self-advocates and parents/guardians/healthcare professionals/case managers/disability advocates when any topic related to care, support, employment, inclusion, residential settings and community environment are discussed.

As a parent/guardian/disability advocate, this concept is very clear to me since I have been told by many trained self-advocates that guardians are only self-serving. This is truly not my perspective at all but it is attributed to me since I am a guardian. One effective tool used to help bridge this conflict is to meet in person. Once you know the person, views and ideas may change. It is only by meeting people and working together as people, rather adhering to  inflexible ideologies, that we can break down these silos and make progress.

Mental age theory

Ivanova Smith has written an article in NOS Magazine regarding the issue of using “mental age” as a description for people who happen to live with an intellectual and developmental disability.  She states “We need to educate medical professionals that there are better and more respectful way to explain the needs of people with Intellectual/developmental disabilities. Difficulty doing specific tasks isn’t the same thing as being an actual child.”

I have never seen this description used to state that an adult with IDD is a child – they are adults who have a variety of support needs in many areas of life skills.  Using labels and descriptive terms for various ranks, steps or skill levels are used in all types of employment, school, sports and athletics,  and hobbies.  One must pass through step 1 to get to step 2.  This is a natural progression.  One need not necessarily master the step but at least have a passing effort before one is able to proceed or progress.  There could be many reasons for a rapid or slow progression through these levels.
People do not excel in all areas of life and do not need to be an expert in everything they attempt to have enjoyment and meaning from it. Also, people may “stall out” at one step and many years later may revisit and then gain more skills. This is not set in stone as it is a fluid process and there is always learning and progress occurring as people experience life. This progression is also true with developmental, emotional and maturity stages. It is not “good” or “bad” but just is.

I often hear that people do not like labels – but labels help us to learn and navigate life in so many ways. Think for instance of working in trades – there are labels applied to levels of skill development – apprentice, journeyman, master. One is not a better person than another by having a different label but has a different skill set. These labels help us, who may not be familiar with the work to be done, who we might want to seek out for consultation. Labels are not inherently bad but can be extremely useful in many situations.
I am asking for your input into how you, as a trained self-advocate, differentiate between people who may need an extreme amount of support to manage the daily activities of living versus someone who may only need some occasional guidance with specific areas? How do you, as a trained self-advocate, differentiate between someone who is unable to utilize public transportation and needs to be driven everywhere in a private vehicle versus someone who can navigate the city independently on public buses?
Or maybe you do not see the need to differentiate – if not, why not?

Please contact me Ivanova – I would love to meet with you in person.

Thank you – Cheryl Felak

 

Have you ever heard the phrase “that person has the mind of a five year old In an adult body?” It is something many adults with intellectual disabilities, like me, have to deal with. For years, medical professionals have told parents of newly diagnosed Intellectually disabled people that they would mentally be children for their entire lives.…

via Mental Age Theory Hurts People with Intellectual Disabilities — NOS Magazine

#inclusivity  #diversityisstrength  #YouAreTheChange  #beyondinclusion  #disabilityrights  #intellectualdisability   #disabilitysupport  #mentalage  #agetheory

 

Senate Health Committee Hears Bill which looks to close ICF/IDD

Today SB 5594 was had public comments in the Senate Health Committee (Washington State)

There are actually some wonderful new ideas expressed in this bill (Federally Qualified Comprehensive Community Healthcare Clinic!!) but plans  to consolidate  from a combined campus of a skilled nursing facility and an intermediate care facility to just a skilled nursing facility is troubling.  This is  not explicitly written in the language but it is clear this is the goal.

The bill states a building at Fircrest must be remodeled and updated to serve as a skilled nursing facility.  Other steps must be taken to consolidate other buildings and ensure residents are provided the opportunity to stay at Fircrest or move into the community.

Given that Fircrest will only have a skilled nursing facility, what will happen to the residents who are not eligible for those services but choose to stay at Fircrest in an ICF/ID?  The bill does not address this population that currently resides at Fircrest.

“Former Fircrest School residents who fail to succeed in the community may, after repeated failures, remain in the community or may choose to move to another residential habilitation center; however, former Fircrest School residents may not return to Fircrest School.”

The other HUGE issue is that the community is far from ready to be able to accommodate the needs of the number of residents who may choose to live off campus.  Already there is a long waiting list for housing, staff and other services.

The critical issue that needs to be addressed before any changes can be made is that of supported living wages and supports.  These wages and supports need to be appropriately funded to provide the services.  This is the system that will provide stability, success and sustainability to community residential settings and is the issue that needs to be addressed as a first step to any issues of consolidation of the intermediate care facility.

Thank you, Alpha Supported Living

This past year has seen great changes for my son and this past Thanksgiving, I realized how much growth my son has made since last Thanksgiving.

Last year, our son, age 21, had lived at the Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID) for 5 years.  The ICF/ID was only 10 minutes from our family home and part of the community in which our son was born and raised.  We had frequent contact, outings and visits both at our home and his.  Unfortunately the team at the ICF/ID was unable to manage my son’s healthcare and daily support needs but we didn’t think we had another option.

I remember not only the great sense of relief I had when I took him back home after our Thanksgiving Dinner last year but also grief and sadness about his increased agitation and manic behavior which was so disruptive.  I questioned if we would be able to have him visit for future family holiday celebrations. He had been experiencing increasing mania and the physicians at the ICF/ID refused to follow the recommendations of our son’s psychiatrist regarding medications to control his mania.  I remember expressing my great concern regarding his increasing mania  to the psychiatrist during our meeting last December and feeling powerless in getting the needed medications prescribed and administered.

This Thanksgiving, our son was a totally different person.  He was at our family home for at least 4 hours and stayed focused and helpful.  His participation in meal prep and tasks was amazing.  He even sat at the table and ate a nice sized meal.  When it was time for me to take him back to his house, I realized that he had set a record for length of time at our house and that I was not totally exhausted and spent from trying to manage his mania, other disruptive behaviors and physical care.

I attribute these great changes to the move he made last spring from the ICF/ID to a supported living arrangement in a home with 2 housemates.  This was made possible by the Roads to Community Living Grant and Alpha Supported Living Agency in being able to provide these great services.  My son has greatly benefited in so many ways and in such a short time.

Within two months of moving and having his care provided by Alpha Supported Living, our son’s health issues were treated appropriately, medications and treatments administered as prescribed and other long standing health issues were addressed and managed.  It was great to see these changes and work with this team to create solutions that worked.   But the improvement and stabilization of my son’s health issues are just the beginning of the changes we have noticed.

Our son is learning new skills and is supported to increase his ability to make choices and take responsibility for various aspects of his daily life tasks.  He is now able to wash his hands, sit at the table and eat a whole meal, clean up his dishes, go grocery shopping for his own groceries, and is very compliant with taking his medications and other responsibilities such as ensuring his iPad is plugged in at night and putting his glasses on his dresser before going to bed. He is able to follow verbal prompts better and stay on task a few seconds longer.  He is becoming more self-directed in being able to communicate his needs and desires.

We are beyond proud of the accomplishments he has made this past year with the support from Alpha Supported Living.  Seeing first hand what a difference this care makes it is imperative for our states to support the wages of the caregivers.  We need continuity of care – both as the recipient of the care and as the caregiver – to continue to provide this care.

Some supported care agencies are experiencing staff turnover rates of 50-70%.  This is not only very disruptive to the clients but increases the overall cost of care when one looks at the cost of recruiting and training a revolving door of caregivers.  Once trained and placed in a job many direct care staff leave due to the intensity of the job and low pay. The state sets the pay rates and it is just not enough to cover costs of the direct care staff.

Supported living is in crisis.  Funding for direct care staff has been ignored for years while costs have continued to increase.  The level of intensity of staff support is increasing and we need to provide the appropriate staff.  This level of care is critical to many in our community to enable them to have a meaningful life experience.

A meaningful life is more than just having support staff in your home though.  It is being able to go out and be in the community.  Many agencies do not have funds to provide transportation or staff for outings, activities and medical appointments.  Many agencies are not able to hire a Registered Nurse to oversee healthcare or have a dedicated Healthcare Coordinator to manage the variety of healthcare needs. Again, the intensity of these needs are increasing.  We need to have providers trained in the particular needs of the population with intellectual and developmental disabilities. These aspects of care should not be “extras” but should be part of the service. But,  unless an agency is able to fund raise for these critical necessities  to a meaningful life, the clients will go without.

In my son’s situation, the transportation and healthcare are paramount to the success he is experiencing. .  My son has a job at Lowe’s working 2 hours each weekday morning  (supported employment provided by PROVAIL). and needs transportation to and from work .  He also has medical treatments at least 3 times a week for which he needs transportation and support at the treatment in addition to other medical appointments about once a week.  Without a dedicated vehicle for each home supported by Alpha Supported Living these necessary trips would be impossible.

It is only through fund raising that Alpha Supported Living is able to provide these life necessities to ensure not only the basics are provided but other opportunities to have a meaningful life – art classes, walking clubs, cooking groups, community outings are just a sampling of the other “extras” that help to provide quality experiences to one’s life.

Living in a home with supported living as opposed to in a state operated ICF/ID, is a collaborative effort.  We, as parents, guardians, residents, community members and staff, can make a real difference.  We can adapt to changes better and address issues directly when they arise.  There is more control over one’s life.  We can actually DO something to help make one’s live more meaningful – something that we generally cannot do for those who live in a state operated ICF/ID.

Below are some suggestions for what you can DO to help make someone’s life better:

  1.  Communicate this great need to our legislators – we need to meet minimum wage requirements and keep pace with the cost of living increases that we all experience.

2. Make a donation to a supported living agency to help provide for supports other than direct care staff wages.

Below is an example of how your donation helps to improve the quality of life of clients supported by Alpha Supported Living Services:

alpha-support-is-critical

(for clarification on the RN – this amount  has to do with the amount needed to bridge the gap between what Alpha is funded and what they provide. The professional services rates they receive from DDA provide for a part-time RN. The amount listed gets them to a full-time RN for 6 months)

If you would like to donate to Alpha Supported Living Services you can reach them at

Alpha Supported Living Services

MAIN OFFICE
16030 Juanita-Woodinville Way NE
Bothell, WA 98011

t 206 284 9130 | f 425 420 1133

 

Please join me in making a monthly donation to Alpha Supported Living Services – it WILL make a difference in someone’s life!

 

 

 

 

 

 

 

DD Ombudsman

Hopefully soon, Washington State will have a Developmental Disabilities Ombudsman.

This past year legislation was passed (thank you  Senator O’Ban,  the legislative champion for SB 6564, providing protections for the most vulnerable people from abuse and neglect) which will provide funds to develop The Office of Developmental Disabilities Ombudsman.

dd-ombudsman

There has been a great need for this type of oversight for all people with developmental disabilities but especially for those who live in an intermediate care facility (ICF).  While the Long-Term Care Ombudsman can help in situations for those who live in a skilled nursing facility, group home, assisted living or other long-term care facility, the Long-Term Care Ombudsman is not available to assist the residents in the ICF.

These residents have been without an adjudicator if concerns regarding their care  or other issue are not addressed appropriately.  This is especially true for those residents in a state operated ICF.  Without an independent authority to help mediate differences between the person and the state, these residents may not have had an objective investigation of their concerns.

Allegations of neglect and harm have been ignored or swept under the carpet by the state agency when conducting investigations of state facilities.  The DD Ombudsman will help prevent some of this injustice to our most vulnerable citizens.

I contacted the Department of Commerce last week to inquire into the development of the Office of the DD Ombudsman given that the bill was passed last legislative session.

Below is the response that I received from a spokesperson for the Disability Workgroup:

“A stakeholder meeting was held September 29th and written comments were accepted through October 15th.

I am currently drafting the solicitation to be released later in November. Evaluations of the bid responses will be in January 2017 and an announcement of the winning proposal probably in February 2017.

That organization will need to create the office, hire staff, train volunteers, etc. I anticipate them starting their ombuds duties sometime in the summer of 2017.

I hope this helps. Thanks for asking.”