Exploitation!

For the many #neurodiversity activists who claim Exploitation! with regards to honoring a person’s choice, we are going to quote some definitions we found for exploitation:

  • The act of using someone unfairly for your own advantage
  • The use of something in order to get an advantage from it
  • The use or development of something for profit or progress in business

(from Cambridge Dictionary.org)

  • unfair treatment of someone, or the use of a situation in a way that is wrong in order to get some benefit for yourself.
  • the process of making use of something so that you gain as much as possible from it

The Macmillion Dictionary.com

  • use or utilization, especially for profit:  the exploitation of newly discovered oil fields.
  • selfish utilization:  he got ahead through the exploitation of his friends.
  • the combined, often varied, use of public-relations and advertising techniques to promote a person, movie, product, etc.

Dictionary.com

Yes, I understand that someone’s making a buck somewhere – that’s business and like it or not, it’s pretty much how things work.

  • Business make decisions on business needs not on vocational rehabilitation needs. Businesses do not necessarily see themselves as employers but as businesses making or producing a product  or service to be sold in the marketplace.
  • We must not convey the notion that business is expected to create a job where one does not exist but we need to look at what tasks they need done and figure out how we can do them to the the business.  This process can serve both the needs of the  individual and the business.

There are new CMS guideline for HCBS waivers – first and foremost Federal policy makers focused the new HCBS regulations on the quality of life of individuals, and emphasized the importance of a person-centered plan and an annual review of that plan in order to make sure their support needs and life goals are being met.

Policy alone will not improve employment outcomes for those with IDD, and in the case of Maine, it can actually decrease employment rates. Across the country, local communities are trying to create employment opportunities that are created around the interests and abilities of those who have not found meaningful work.  These efforts to increase the variety of employment options should not be thwarted by well-intentioned, yet inflexible policy.  One’s choice of where and with whom one would like to work should be guided by the goals, interest, and support needs of each unique individual with IDD as outlined in their person-centered plan.

Also, in case one may not be familiar with person-centered planning – here is a quote taken from the Administration for Community Living website:

Person-centered planning (PCP) allows individuals to be engaged in the decision making process about their options, preferences, values, and financial resources. Individuals in need of services or who are planning for the future have access to one-one-counseling in a variety of settings, including within the home, community residence, acute care hospital, school settings, or several other settings based on the individual’s needs. PCP is a valuable tool for the aging and disability networks that can improve access to care through streamlined partnerships, technology, and resources that put the focus on the needs of people and their caregivers.

The PCP approach identifies the person’s strengths, goals, preferences, needs, and desired outcomes. The role of staff, family, and other team members is to enable and assist the person to identify and access a unique mix of paid and unpaid services to meet their needs, and to provide support during planning and implementation.

When done thoughtfully, PCP creates a space of empowerment—a level playing field—that allows for consideration of personal preferences as well as health and safety needs, without unnecessarily restricting freedoms. The best person-centered planning helps people to live better lives, with support to do the things most important to them.

PCP is a cornerstone of the No Wrong Door systems model.

By the way – advocates – are you being paid for your advocacy work? Is advocacy your employment?   We are a fully volunteer organization doing this work for free on our own time.  We are committed to making services and supports better for each person, as they choose.

VAPO – Vulnerable Adult Protection Order – Part One

This past year was met with several new and “interesting” issues that needed attention.  One such issue was our adult my adult son being stalked by a predator.  As with most situations like this, there is a “honeymoon” phase of grooming before the predator pounces on the victim.

Adult grooming is correspondent to child grooming and applies to any situation where an adult is primed to allow him or herself to be exploited or abused. While it is a common assumption that grooming is only practiced on the very young, identical emotional and psychological processes are commonly used to abuse or exploit adults the elderly, and those with compromised mental facilities.

An predator will identify and engage a victim and work to gain the target’s trust, break down defenses, and manipulate the victim until they get whatever it is they are after. Overt attention, verbal seduction (flattery / ego stroking), recruitment, physical isolation, charm, gift-giving, normalizing, gaslighting, secrecy, and threats are all hallmarks of grooming.

Looking back on what all transpired, we can see how this grooming occurred – given that Kathy also lives with schizophrenia (we did not know this beforehand – not that it would have changed anything except knowing that it is not uncommon for people to stop taking their medications  we would have watched for changes in behavior sooner) Unbeknownst to us at the time too, Kathy has a history of stopping her medications and decompensating quickly – as happened in this situation too.

Kathy is a woman that we have known of for many years (maybe 20 years or so).  She and her family were parishioners at our church when we first met them.  We really didn’t have much personal contact with the family other than saying “hi” when we ran into them on occasions and then it seemed as if the whole family disappeared for several years.  Periodically over the years, Kathy would show up alone at various events but we never saw her consistently.  The most common place would be walking around
Greenlake since members of our family make that a daily habit and maybe Kathy does too.  Then again, the contact would mostly just be a quick greeting as each person continued on their way in opposite directions.

February 2018, we were at a family dinner at church and Kathy was also there and joined us.  It was actually the most that we had talked with her for about 20 years.  We updated each other on our various children and what they were all up to.  Thomas, our son with IDD was with my husband and me.  Thomas is extremely engaging and interested in people.  He tends to draw people to him with his constant questions and interest.

Kathy picked up on this and realized that she and Thomas had some common interests – Catholic Church, going to Mass, music (especially “classic rock” music) and driving around Seattle looking at sites and listening to music in the car.  Kathy approached us to see if it would be okay for her to visit Thomas and take him the Eucharist (communion) at his home.  We thought it would be a great idea and Thomas would love it.  It would increase his “natural supports” which is typically a good thing.  There would be Thomas’ support staff there if any issues came up.  This took a couple of months for everything to be arranged and “instructions” gone over and all was good!

The first visits were a success and Thomas really enjoyed meeting with Kathy and sending her emails.  We were glad that he had a new friend and someone to share interests with.  After about 4 visits, Kathy asked about taking Thomas out and to a mass at church.  This opened up a whole new area and anxiety but we reviewed specifics about safety and behaviors, specific instructions regarding issues in the community and knowing that it would be our church they would be going to, we agreed.

Kathy followed all the instructions and she and Thomas had a great time – out for dinner, picnic in the park, mass and then driving around listening to music.  We were all feeling good about this and that it had been successful.

Unfortunately, that did not last long – within a week things got very, very crazy – something that I would never had suspected.  Kathy then began to want to see Thomas every day, take him out to mass even when he had already gone to mass,  began writing very odd messages to him and other odd behaviors.

There were plans to take him out again and she did not follow the instructions and this caused an extreme crisis in Thomas’ life.  I was informed by his staff that evening and quickly followed up with Kathy that I needed to meet with her to discuss the issues and again wrote out issues of concern and “instructions” that anyone working with Thomas needed to follow hoping that she would see that I was not singling her out but that these were “rules” that we all followed to keep Thomas safe.

I was totally unprepared for the response I received from her –

“Let’s discuss Thomas living with me for a trial. I need to discuss with my other son yet I think we could make it work for a trial or 2. He’s very calm with me and I understand his disorders very well.”

Luckily, she had gone out of town for that weekend and I knew I had a little time to compose a message which was very short and to the point –

Because of the enormous disruption triggered by your extremely late arrival with no communication on Thursday (May 3, 2018) we have decided to stop all visits between you and Thomas. Under no circumstances are you to visit or communicate with him

Her response – “For Now” and then continued to email Thomas.  Things just got more strange from there.

Kathy returned to Seattle and tried to enter Thomas’ home while I was there.  She was told to leave and the staff chased her out and we called the police.  Kathy pointed her finger at me (like she was shooting and said “bang, bang”) as she left the house.  I was totally shaking but trying not to show it because I didn’t want to scare Thomas.

After about 30 minutes I felt it was safe to leave and before I got home (10 minutes away) I received a call that Kathy had returned.  She also texted a message to my husband

“Jim please call me. Tommy is my son as you know and I want him back. I AM God and I want to see him now. I’m very concerned about his welfare. Please help me. I’m sitting outside of his house.”

This message and her actions sent us into crisis mode with police activity and court – we obtained an emergency restraining order (which she violated several times) and lived on pins and needles while also trying to remain calm for Thomas’ sake.

She began to stake out Thomas’ house, drive up and down the street, park in neighbor’s driveway and walk around Thomas’ house trying to see in his window.

Cheryl & James – Bruce and I are preparing legal action to restore custody of our son Tommy. Let us know if you choose to settle peaceably. You may receive more mercy.

We had police presence at our house and at Thomas’ house with extra staff funded through DSHS, alarms and motion sensor lights installed all around his house.

Hi James,

Are you willing to testify at Thomas’s hearing so that I can continue to visit with him? As you know, I am his biological Mother and Bruce Springsteen is his biological Father. We want him back and are aware of the voodoo problem…we can handle any complications.

We need your involvement and want Thomas to be present at the hearing. Let me know where you stand on this. We plan further legal action if I cannot visit with him. He can live with me rather than whatever Cheryl is intent upon. I love Tommy.

to be continued –