WELCOME

Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.


Finding Your Way Around

TO SEE OTHER'S INPUT: below each post on the right, click "links to this post;" or in the left side column, under "Labels," click the discussion link that interests you.

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Become a follower. Public support is a good thing!




Sunday, September 24, 2017

SOMETIMES "TWO" - SOMETIMES "TWENTY THREE"

This story came to me in an email today.  I'm posting it  as it was written, having replaced names with pronouns.

BTW:  I love these people: The son for his innocence and  fresh, enthusiastic love of life and  his very special parents for nurturing and supporting him exactly where he is at all times, never pushing him to be more than he is, but always helping him to learn what he wants to learn,  and do what he wants to do within the limits of safety and consideration of others.

The story:
"This afternoon, when my son was having an absolute screaming fit about making a choice I was asking him to make, I said "you're acting like a two-year-old." When he stated the choice that he wanted, he would talk and his normal voice and be very calm, but when I tried to convince him to choose the choice I wanted, he would start to scream again like a two-year-old and jump up-and-down. This was on the sidewalk walking home after church and, of course, people would turn around and look at him and smile because most of the people there know  him, but they haven't seen him tantrum like that because we do try to really help the minister and  stay under control, and keep his voice down while in church .

During the tantrum, I asked him, "How old are you?"  He answered,  "two."  A couple minutes later, when he was really calm, I asked him how  old he was -  he said,  "23." His father and I started cracking up because of the correspondence we've had with somebody over acting like a two-year-old and mental age very......

Later this evening, I was riding in the car with him  and we were talking and I recorded just a tad bit of the conversation we had and I hope you can download it or hear it somehow - I think you might get a kick out of it. It doesn't seem like it hurts his feelings at all to be called a two-year-old."
[End of story]  

This blog format doesn't support audio, so I've transcribed the clip in the email.  Mom's voice is always animated with a tone of non-judgemental curiosity.  Son's responses are superquick with a tone of matter-of-factness.  No shame.  No upset.  Just delightful self-acceptance and sharing of himself.

 Audio clip, transcribed:
Mom: "You know when you get really upset and you start to scream?   You know that?"

Son: "Yeah." 
"

Mom: "How old are you, then? 

Son: "Two." 

Mom: Two?  How old  are you now? "

 Son: "23"   

Mom: "But if you have a tantrum, how old are you? "  

 Son: "Two." 

Mom: "When you get really mad because things aren't going your way? And you start screamin'?  

Son: "Yeah?"

Mom: "How old are you?" 

Son: "Two."


Mom: "OK.

How old are you right now?" 

Son:  "23"

 [End of audio clip.]

It just goes to show that one size does not fit all!  Great gratitude to this Mom for sharing their story!

Saturday, September 9, 2017

MENTAL AGE VS "MENTAL AGE THEORY"

In her very instructive opinion piece,  here,  Ivanova  Smith explains why she opposes "mental age theory."   She says: "Have you ever heard the phrase “that person has the mind of a five year old In an adult body. "For years, medical professionals have told parents of newly diagnosed Intellectually disabled people that they would mentally be children for their entire lives."  "Historically, so-called “mental age theory” has stripped people with intellectual and developmental disabilities of our dignity, our reproductive freedom and our parental rights. Age theory has also been used to strip us of the rights to make adult choices, such as buying alcohol and tobacco or having sexual relationships. "

Of course, labels hurt when they're  used inappropriately.   When I was at Antioch University, I argued with one of my degree committee members.  "I won't take that course in Developmental Psychology.  I won't take a course that teaches me to label people.   A psychiatrist, he argued back.  "You should take it so you can have an intelligent conversation with other professionals and be respected for your opinion."  "OK, I grudgingly conceded."  The course turned out to be pivotal in my eventual practice as a therapist.    So, last night, when I read  Ms. Smith's enlightening article,  I  felt inspired to reply:

"Thank you for explaining your hurt around this issue. It enlightens me about the background of employing mental age.

In my experience, as a developmental therapist, (working with people who are not considered disabled) it is necessary to meet a person where s/he is, developmentally, in order to help her or him move forward. My purpose is not to pin the person to a mental age forever. Just the opposite, it is to address them where they are and provide the appropriate responses to the needs of their current developmental age. My experience, as well as that of other developmental therapists, has been that only when a person is addressed at the age in which s/he is functioning, can s/he truly shift internally to their next stage of development. Also, it should be noted that a person can be arrested emotionally at one age, mentally at another and physically at still another. These are not fixed, but potentially fluid ages. Younger is not worse. Older is not better. (Pejoratives like “childish” should not be employed.) At one rate or another, everyone has a natural drive to move on to their next stage. In this regard, I wholeheartedly agree that each person needs and deserves support to move forward.

Now, moving on to my experience with people who have what we now call intellectual developmental disabilities: I’ve seen some very unhappy toddlers-in-adult bodies when the comfort of their cuddle toys was taken away because they were deemed too old for such toys. Also, with good reason do we carefully protect adults with early developmental mentation from running out into the street or playing with electrical sockets or knives. This does not mean that such people cannot progress to more mentally mature levels, only that we are honoring their current stage of development and the stage and rate of learning of which they are capable and which we have the skills to support.

I hope you can hear the caring and respect in the perspectives I’ve written about. I hope, too, that you and others can, in the future, hear such references without feeling demeaned or judging that another is being demeaned. In my view, to honor a person where s/he is, developmentally, is respectful and to assume s/he can do or be more in the moment than s/he can is disrespectful."

With great respect,
Saskia

Sunday, September 3, 2017

SUBMINIMUM WAGE HOT POTATO

HISTORY & IMPLICATIONS

THE SEATTLE SUB-MINIMUM WAGE HOT POTATO has deep roots and serious implications. The bottom line is that Parents and Guardians of people whose cognitive/social/physical development makes sub-minimum wage imperative for their job retention, should contact the Seattle City Council members. Find email addresses here: https://sccinsight.com/how-to-contact-your-council-members/ or call their offices at the numbers listed @ the same web address.

HISTORY AND IMPLICATIONS:
I've been watching a very heated conversation on the Seattle Commission on DisAbilities facebook page. Now, the links to the conversations have been disabled. (no pun intended.). What I've seen is that the commission members don't recognize the early level of intellectual developmental disability for which guardian decision making is required for an affected person's wellbeing. It's been claimed that all of the members have disabilities. One person, who writes at a very high, if inflammatory, level, claims to be intellectually developmentally disabled, but another writer on the thread refers to him as autistic and seems to think that is not a legitimate intellectual developmental disability.

Another person passionately, if rudely, objected to a participant's referencing "eighteen month level mentation" as "offensive to all disabled people." That person argued that a person who is 30 years old has a 30 year old intellect. Yet, the writer who used the "eighteen month" term thought "the age of developmental intellectual attainment" to be crucial information for knowing how to meet the affected person's needs. I agree with the latter.

The conversation veered away from sub-minimum wage when one contributor who does support RHCs, but hadn't written that, was accused of being "inauthentic" because she "supports segregation." Her defense, though civil itself, provoked passionately irrational accusations of her supporting murder and rape. At first, I saw those comments as simply ignorant attempts to win an argument at the expense of rationality and civility. But after reflecting on it, I realized that they must have been born of the accuser's deep fear and perception of institutions as prison-like environments where any terrible thing might happen to a resident. My thought is that while terrible things can happen anywhere, the strict oversight in RHCs makes them safer than other venues.

There were also comments by commissioners disdaining parents and guardians and denying their legitimacy as spokespeople for their children and wards. They expressed as fact their assumptions that all people with intellectual developmental disabilities could identify and express for themselves what was needed for them and so should be considered their own experts. This perception is what I began to consider to be their denial of early developmental cognitive arrest/delay.

In the 1950s, I'm remembering my mother's denial that my sister was "mentally retarded." We were allowed to think and say that she had "cerebral palsy" (which she also had) because it was recognized that people with cerebral palsy could be smart. It wasn't until the 1960's that mother finally, barely, grudgingly could bring herself to admit her daughter had mental retardation.

I'm perceiving that the roots of what is becoming societal denial of early developmental cognitive arrest/delay are deeply embedded in the misuse of the term, "Mental Retardation. The sense of insult and shame at that label that was felt by people with higher levels of thinking and function, but whose development, otherwise, didn't fit within typical social norms, was strong. Today, despite the replacement of the term, "mental retardation" with "intellectual disability," those old, strong feelings, apparently still are operating to deny that there is any legitimacy in the literal concept of "mental retardation." Those people are influencing powerful groups and public agencies throughout the country.

The term, "mental retardation," used to be common. Only a handful of years ago, groups of higher functioning people with intellectual disabilities and their advocacy groups began advocating it's replacement with the term, "intellectual disabilities." The result has been it's adoption in legislation around the country. I believe, today, we would find that, in addition to their parents and guardians, most of the people in those groups are at the higher end of the autism scale and including Aspergers syndrome.

With the loss of the term "mental retardation" we lost a common language for early developmental cognitive arrest/delay. And since losing the wording, I believe we have been losing critical recognition of the phenomenon. Unfortunately, censorship of language doesn't eradicate a phenomenon; it simply renders it less publicly visible.

We must stop this denial snowball from gaining any more momentum. I'm only now recognizing how serious the danger is in allowing it to continue. For some time, it as been affecting public policy in such a way that it constrains positive measures needed by people whose cognitive ability became severely impaired at very early stages.  For instance:

1. In the interest of protecting non-institutional residential rights of higher level people who do not need medical, therapeutic, and other resources to be very close to home, in some areas, laws have been passed that disallow locating residential facilities for people with intellectual developmental disabilities conveniently near a full service therapeutic facility for people with intellectual developmental disabilities.
2. To further the ability of people with higher level intellectual disabilities to be employed by regular businesses, to the detriment of their former workers with minimal cognitive skills, many sheltered workshops have been closed. Today, many of their former workers sit at home without daily activities.
3. Now, the attempt to outlaw the sub-minimum wage threatens to foreclose the jobs of workers whose abilities are incompatible with the profitability of businesses, even with publicly supported job coaches. They, too, could wind up victims who sit at home without activities.
Recognizing that people with higher level autism and people with early developmental cognitive arrest/delay are no more or less important than each other, the needs of both groups and those in between must be recognized in law as well as in society.

The next, important step, as I see it, is to begin reincorporating language that helps differentiate early developmental levels of cognition + their accompanying social or physical function from higher levels of intellectual developmental disabilities that are typical of people with  high enough levels of autism for them to be arguing for their own rights or at least to be able to benefit from significantly less intensive assistance and representation by guardians than those with early developmental  cognitive arrest/delays.

The Seattle Commission on DisAbilities is a public entity. It's make-up should include as much representation of people whose early developmental cognitive disability requires guardianship as it does of self-advocates. This should also be true of all other agencies which purport to advocate for all people with intellectual developmental disabilities.

Ideally, the Seattle City Council, which, currently is considering the bill to outlaw sub-minimum wage certificates could vote to table the issue until: 


1) Protections for people with early developmental cognitive arrest/delay are incorporated. 


2) Provision is incorporated for better wage protections for people of higher intellectual disabilities whose work is underpaid due to the current sub-minimum wage certificates.

Then, the bill could be amended to accommodate the changes.

Only then would a vote make sense.

The time to address this request to the Seattle City Council is now.

Please contact the members immediately.

Friday, April 14, 2017

KEEP FIRCREST OPEN: SAVE LIVES

4/13/17
Dear Senator:
I'm writing on behalf of my sister, Kathy, who lives at Fircrest.  She is very medically fragile. 

We're  hearing that some legislators want to sell Fircrest's land to help balance the budget.  The medical or mental/behavioral stability of most of Fircrest's residents is fragile.  It depends on very strict care  parameters that are  specific to each person's condition.  Their states of fragile stability put them at high risk for Transfer Trauma, defined as  "a set of symptoms and outcomes that result from a transfer from one environment to another."* Death is among the outcomes included in the diagnosis of Transfer Trauma.

The stability of most residents at Fircrest is fragile.  Literally, your vote could mean the difference between  life and death for some of Fircrest residents.

 One person died after being moved for  Frances Haddon Morgan Center's closure. He died  a long, painful death after drinking laundry detergent because he was not watched as closely as he had been at FHMC. One legislator tells me she knows of  5 others whose moves resulted in their deaths. However, even one would be an unacceptable consequence.  I hope you agree.

In the last attempt to close Fircrest, 6 people died. The stability of each had depended on very careful adherence to detailed, personalized care and treatment at Fircrest. New caregivers and professionals had received personalized orientation + care plans and histories, but that was not enough.   The requisite experience with each person and his or her condition was missing.  In the absence of that experience, nuanced signals were missed, wrong  decisions were made, treatments were missed or given in the wrong way.  6 people suffered and lost their lives.  6 families lost their loved ones. They were 6 tragedies that could have been avoided.

I'm writing to ask you to spare the lives of all of the Fircrest residents that would be at risk if Fircrest were closed.  Please, instead, support the Fircrest Master Planning process  for which there is money  in  all three capital budgets. Two Master Plan versions are under consideration. Both call for replacement of the nursing facility.  This short term capital investment will result in long term operational and maintenance cost savings.  Both also  call for about a 50% reduction in the Fircrest School footprint with the other 50%  to be available for revenue source development:  WIN-WIN for all concerned.

Please don't try to balance the budget on the backs of Fircrest residents.  OPPOSE 2SSB-5594

WHY FIRCREST IS ESSENTIAL

Dear Senators,

Words that often describe Fircrest residents when they first arrive:  "Vulnerable,","Volatile," "Violent," "Unstable," "Fragile," "Difficult," "Traumatized"  "Anxious," "Dangerous," "Scared," "Hurting," "Over-stimulated", "Dual Diagnosed",  "Physically, mentally, &/or medically ill", "Out of control," "Obsessive," "Paranoid," "Panicked, "Withdrawn," "Frustrated," "Neglected", "Abused," "Suffering," "Desperate," "Terrified,"

 They come from "community" residential placements or jail, or inappropriate psychiatric placements or hospitals.  They come  when their "community" providers have been unable to  provide what they need in order to be successful.    Most of the time, DSHS tries other remedies  first.  When they don't work, after multiple, failed "community" placements, finally they are admitted to Fircrest.   They come to Fircrest for "crisis stabilization."  They come to Fircrest for relief from suffering. 

Today,  there are 30 such people at Fircrest.   With careful help, gradually they find a sense of safety. If they're volatile, violent or  tantrum-prone, they're protected from hurting themselves and others.   Gradually, with the right kind of individual support, trust builds and self-control is learned.

Words that  often describe Fircrest residents after they have become less scared and more stable:  "Sweet," "Bright," "Happy," "Loving," "Eager," "Adventurous," "Timid," "Calm," "Curious," "Shy," "Gregarious," "Capable of learning, " "Willing," "Expressive," "Interested", "Exuberant,"  "Eager to please," "Independent" "interested," "Playful", "Pensive,"Quiet," "well-managed," "safe," "protected."

Most of Fircrest's other 86 residents  arrived in similar conditions.  They stayed on once they were stabilized  because it was the best place for them.  They stayed because Fircrest was the "community" that offered them the care and  supports they needed. Their stability is relative.  It depends on the therapeutic milieu, expert care and coordinated, interdisciplinary teamwork that is the essence of the Fircrest community.

For most people with intellectual developmental disabilities, SOLAs, supported living, or group homes can be appropriate placements. But NOT Fircrest residents.  Creating  more SOLAs, providing more group homes or supported living can't substitute for Fircrest.   If "community" providers could have managed them, they wouldn't be at Fircrest.  They still would be out in the general community. 

If you've been considering closing Fircrest for the sake of balancing the state's budget, please reconsider.  To try to balance the budget on the backs  of these most vulnerable people would be careless and inhumane.

The 2 proposed Fircrest Master Plan alternatives set aside about  50% of the Fircrest campus for development for revenue production. Please let that be enough.