Abled/Disabled Division

Many recent issues with regards to advocacy are termed with the labels of “abled” or “disabled”.  This really strikes me as very odd, particularly given that so many have rebuked being “labeled” in the past so readily label others.

“Nothing About Us, Without Us” and “Did you even ask disabled people who would be affected”  are two of the most common statements from disabled self-advocates.

I have also found that one is labeled “abled” with no regard to disability – but it tends to mean a person who does not agree with the “disabled” viewpoint.  From those who self-identify as “disabled”  (which from my observation has no bearing on if the person is disabled or not – I know some people with significant disabilities who would never self-identify as “disabled” because they are who they are) I have witnessed extreme judgements and strong biased opinions written that are based solely on fiction.  No facts or evidence are produced to support those judgements but they are sold to others as the truth.

Also, disabled activists may be very “abled” in comparison to others who are disabled – do these “abled”  disabled activists speak for every disabled person?  In my opinion, they do not and have no interest in learning about the needs and choices of those “more disabled” then they are.  How does one even measure disability when it is so varied from one environment to another?

The disadain, hate speech, extreme judgements of disabled activists against anyone they define as “abled” (again this has no bearing if the “abled” person has a disability or not since it is in the eye of the activist) borders on pathology – delusions and fabrications of actions they believe “abled” people have done – is something that needs to be addressed and called out.

Using the “disabled card” to get away with abusing others is not okay.  It only builds walls and barriers to collaboration. One such disabled activist in Seattle swears at, calls people “sociopaths” and makes up abuse by other disabled advocates if one has a difference of opinion.  People say “he’s disabled” as if that excuses this behavior.

These are just some of the reasons that I just have to laugh at the “Breaking Barriers” award given out by Disability Rights Washington – an annual award given in several categories.  The advocate award is given to someone with a disability for breaking barriers to advance the rights of and to improve the lives of people with disabilities.

Obviously, my definition of justice and ‘breaking barriers” are very different than DRW’s definition.  They chose Shaun Bickley, the co-chair of the Seattle Disability Commission and the Secretary of Self-Advocates in Leadership (SAIL).  I totally agree that this person is very committed to his activist role but I also question his ability to build bridges and work collaboratively with others who may not totally agree with his opinion and deceit.

In addition, the issue of the elimination of special certificates which allowed people with disabilities to be able to be employed at less than the minimum wage has proven to be harmful to those involved – Mr Bickley is receiving this award for his successful campaign to ban these certificates.  This is discrimination against those with disabilities and prevents them from having jobs as learners, apprentices or messengers.

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.”

The Right Tool for the Job

As anyone who does carpentry knows, having the right tool for the job is critical to success.  This  statement does not only pertain to carpentry though – it can be applied to many professions and life skills.  Sure, one may be able to “make do” with other tools but would you really want your surgeon using instruments meant for large bones being used on small, intricate bones?  I shudder to think what the outcome would be.

The same thing is true regarding speech and communication.  I have long held the belief that just because someone talks does not mean that they are able to communicate and make their needs understood by others.  In some respects the fact that a person talks may actually inhibit their ability to communicate because people will assume that since the person talks, they can say what they want to and not look for alternative methods that may work better for that person.

Another example is the use of writing.  We tried for years to encourage my son to learn to write with a pencil.  He had no interest in holding it or using it for things other than trying to stick in his ear or up his nose.  We then tried to get him interested in writing his name, and then at least his initials, which was barely successful before he would drop the pencil and move on to something else that caught his attention.  Yet, he was able to learn to read and reading has continued to be one of his favorite joys.

My son can talk and read so it had been assumed that he would be able to communicate his needs.  People assumed he would ask for help if he needed it or tell them when he was hurt – because he could talk so why wouldn’t he do these things?  I do not know the answer to that but I do know that he would not communicate those needs to others.  I knew that I needed to find another tool for him to use so that he could communicate – not necessarily through his speech since that was not serving the purpose for him.

Finding the right tool for him took time and convincing.  Speech therapy was focused on speech – not communication so he did not qualify any longer.  He had long since stopped improving with his articulation so therefore with no improvement happening, it was assumed he had reached his potential.  My son was able to learn to “type” and given his strong sense of curiosity, he learned that typing would enable him to communicate his needs and desires.  But, there was a problem, he needed to ask to use the computer at his place of residence.  Even though he had a strong desire to communicate he would not ask to use the computer and therefore it was assumed that he didn’t want to use it.  There were other reasons why he would  not use it even if it was offered  – the major reason is that it was in a corner far from the “action” and he didn’t want to miss out on anything.

Since my son did not live at home but in a state-operated residential setting, it was important for him to have communication with us.  We also needed to know when he had a problem and since he would not tell anyone,  there was no way for us to communicate with him either.  I decided that an iPad with internet access would be a great option for him to use to increase his ability to communicate.  The iPad is portable and he can carry it with him so that he doesn’t have to sit in a corner to send an email.  It also enables him to play his educational games with others – a method he uses to communicate – which was again restricted without the use of an iPad.

There were several problems we encountered.  The administration at his place of residence was not supportive  – they were concerned about theft and also did not want to provide internet access.  We persevered and told them that he would have an iPad and he would have internet.  We gave them 3 months notice – time to figure out how to provide him internet services so that his communication was not restricted. They were able to accommodate this need.

The independent use of the iPad greatly increased his ability to communicate.  It gave him a voice that he could use when his speech did not work.  It took a couple of years at school with his teacher and me helping him learn about email and how writing an email could improve his communication.  Once he discovered this tool, he has been unstoppable!

It has proven to be an effective method of communication for him – going from phone messages such as this  – 

with no idea what he is trying to communicate  to emails which are very clear and to the point – communicating his needs and desires.  I have received emails saying that his ankle was swollen and he needed his aircast, many with grocery lists of items he wants to eat, questions about when we will be picking him up for events and general comments about what is going on in his life or asking me how my day was.   I also have fun trying to figure out what he was trying to write because spell check does not understand his writing – sometimes it just cracks me up!

The iPad has greatly improved his independence and self-determination – goals that have been set by the Developmental Disabilities Administrations for people who receive services.

This is one reason that I am appalled by the lack of support in the DDA for internet access and iPad (or tablet) use for those who live in supported and congregate care settings.  Not providing these critical communication tools is a major restriction to these people in accessing their communities and staying in communication with their family and friends.

Rocket science is not needed to provide wireless internet service and the denial of this service is one form of segregation and restriction that needs to be addressed.  Without internet access, many people are isolated and will become more isolated as time goes on.

Here is another example of how this technology benefits not only the user but others in the community.  This young man is non-verbal but was able to write a message which saved a baby’s life. This is truly a magnificent story.  Non-Verbal Man saves baby’s life

 

 

 

 

 

 

 

 

 

 

The last of the Institutions – Part 5

Unfortunately, once again, Susannah Frame has mislead people in this “investigation” series on King 5 in Seattle.  There is much to clarify in this recent segment which aired December 8, 2015.

Myth 1

“Only a handful of states operate more institutions for people with developmental disabilities than Washington. And in Washington, more people live in these segregated settings than most of the rest of the country”

Fact of the matter:ICF ID Table 2013

The above table is only the STATE Operated ICF/ID’s

26 states have fewer State operated ICF/ID s for a total of 25 facilities which are home to 11, 294 people (Average per facility – 451 people)

24 state have more State operated ICF/IDs  for a total of  828 facilities which are home to 42,553 people (Average per facility – 51 people) –

Hardly what I would call a handful of state (or facilities for that matter!)

 ICF ID Chart by state 2013

Myth 2

“Since the 1970s when the deinstitutionalization trend started, 16 states have closed all of their institutions that once housed the developmentally disabled, including Oregon, Alaska, and Hawaii. And 21 states, including Idaho, have fewer than 100 residents total living in these types of public facilities”

Nursing Facility and over 16 residents 2013

CMS cost reported by states 2013

The above table is taken from the CMS-64 report.  Again, Susannah Frame is incorrect with her “facts”.  There are only 8 states that have not reported funds for a STATE OPERATED ICF/ID.

It is interesting to note of those states with no costs for a state operated ICF/ID,  6 of those reports costs for private ICF/IDs.  Some of these are quite pricey to the states that have them.

Interesting that only 12 states do not have a large State operated Facility and only 7 states have less than 100 people in these state operated ICF/IDs and Nursing Facilities.

More to come about the private facilities in each state and the funding for both the ICF/IDs and the Home and Community Based Waivers (HCBS).

I believe Ms. Frame and King 5 have some additional investigative work to do.  This is a very sloppy example of research which they are promoting.

Myth 3

According to Mr. Bagenstos, supposedly a “top Department of Justice attorney in the Civil Rights Division” Washington state “remains kind of stubbornly, an outlier”

Look at the tables above and see for yourself.  By the definition that I understand, Washington is CERTAINLY NOT an “outlier.” 

That’s all for today – more myths to be examined from this episode withing the next few days.

Data Retrieved from the following resources:

Medicaid Expenditures for Long-Term. (n.d.). Retrieved from http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/downloads/ltss-expenditures-fy2013.pdf

(2013). Residential Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through Fiscal Year 2011 (2013). National Association of State Directors of Developmental Disabilities Services (NASDDDS), Human Services Research Institute (HSRI), Association of Professional Developmental Disabilities Administrators (APPDA). University of Minnesota.

United States Census Bureau – Population Estimates – National Totals 2014. (2014). Retrieved from https://www.census.gov/popest/data/national/totals/2014/index.html

Univesity of Colorado Department of Psychiatry. (2015). The State of the States in Developmental Disabilities. Retrieved from http://www.stateofthestates.org/index.php/intellectualdevelopmental-disabilities/state-profiles

 

The Olmstead Decisions is Misinterpreted

 

 

Catch 22 – The Arc “issue”

I recently came across an article written by Irene Tanzman on LinkedIn entitled “Advocacy Organization Catch 22” published June 22, 2015.  I would encourage reading this and in addition taking a look at some of the other insightful articles that she has published.  I felt a breath of fresh air when I first read this yesterday.

There are many concerns regarding “The Arc Issue” as I will call it.  In addition to the facts that Ms. Tanzman has addressed it is important to realize that in order for a chapter to call itself “The Arc” that chapter needs to be aligned with the agenda and policies of the national organization.   Every local and state Arc sign an affiliation agreement with Arc US that the chapter will support the policies of Arc US.  if for some reason a chapter does not support a particular position they are to remain silent and not comment.   So, regardless of what is happening in your region or state, your local Arc can only speak on policies that are dictated from the national organization.

The national policy of The Arc US (taken many years ago in the late 70’s and early 80’s) is that “community” is best and ALL people can be served in the “community.”  There are many problems with this policy:

  1. It is outdated
  2. It is not in alignment with the 1999 US Supreme Court Decision Olmstead v. L.C.
  3. It is not person-centered
  4. It does not indicate why they think this is best, or how it will be achieved.

What are some of the solutions?

Happy ADA Anniversary – DDC Interview tomorrow!

ON this eve of my interview with the Washington State Developmental Disabilities Council I am thinking of all the people who are not able to have their voices heard.  My hope is that the DDC does uphold the 1999 US Supreme Court Decision Olmstead v. L.C. and that they do honor person centered planning.

My hope is that they understand that “inclusion” is defined by the person and what is optimal for that person.  This has been a very difficult concept for many to understand.  Also, we need to take into consideration all the caregivers and support people and what “inclusion” means for them too.  We are all in this together and we need to work together for what is best for the whole.  Not everyone is going to get their way with everything but that does not mean that there are not success stories.

Updates after the interview –