Time to get back to work!

Now is the time to start planning for the upcoming legislative session.  As a community member, it is very, very difficult to be aware of these planning meetings in which paid advocates come up with their annual agenda.  Typically, the issues are not shared or discussed with the community and public until it’s a done deal.

This year, I contacted the King County Developmental Disabilities Administration regarding the legislative committee and planning sessions.  For some reason, the meeting dates and participants were not being shared on the website.  After my inquiry, I have received the information that I requested and an invite to the upcoming meetings.

I greatly appreciate the opportunity to participate in these planning meetings. With that being said, I am also disturbed by the gas-lighting that occurred at the meeting.

The issues that I raised at the meeting was the fact that in Washington State (an Employment First state) which means that a person age 21 or older with intellectual/developmental disabilities MUST try employment services first for 9 months before accessing community inclusion services under “Employment and Day Programs”  within DDA.

In addition, a person utilizing the employment supports (regardless if they are actually working at all or have minimal hours (5 or less a week) they are restricted from accessing community inclusion.  These two supports are mutually exclusive.

Many times these people have no community engagement or opportunities for meaningful interactions during this first 9 months or afterwards.  When these people are left without active supports, they lose skills and become more isolated and we believe that these supports should be able to be accessed concurrently (as many other states offer them.)

There were several representatives from The Arc of King County (paid advocates) at the meeting in addition to representatives from the state DDA, King County DD Admin, and representatives from other agencies which serve people with IDD.

The Arc of King County Director of Advocacy and the Arc of King County Family Engagement Coordinator both spoke up and stated that I was wrong in my statement that people receiving employment supports were not able to also access community inclusion.  I questioned when that change had been made and I was told that it was made several years ago and was in the waivers.

Being “corrected” by these paid advocates and “experts” at this public meeting was really a slap in the face.  They provided false information with their attempts to discredit what I was advocating for.

I followed up with emails to both of these people and to the King County Administrator who was running the meeting.  When questioned and asked for resources to back up their comments, both of these people wrote back to me that I was CORRECT in what I had said at the meeting.

What was the purpose of them speaking out against my comment?  What was the reason that they provided false information to those in the legislative planning meeting?

Employment Programs – DDA Fact Sheet 2019

Community Inclusion – DDA Fact Sheet 2019

 

 

Supported Employment for people with Developmental/Intellectual Disabilities

 

I recently participated in a webinar regarding transforming sheltered workshop situations to supported employment.  While I wholly support meaningful employment for all people I had a hard time getting past the judgmental attitude and biases of the presenters of this webinar.

There was much good information regarding difficulties with change, fundraising and gaining support for projects but I do not think that the presenters fully understand some issues of the families and people with intellectual disabilities.

Sheltered workshops are not what these presenters say they are.  They are not warehouses in which people sit and do piece work all day long.  The sheltered workshops that I have seen are actually quite enjoyable and when I have asked the employees if they like they jobs, their faces light up with pride, they happily show me what they are working on and for those who can speak, they answer in words or phrases that indicate their enjoyment of their work experience.

The presenters talked about roadblocks that people have to change.  One that they mentioned was “what are the people going to do during the day?” Supported employment may only be a few hours a week.  If supported employment is going to replace sheltered workshops, one needs to think about what will happen in those other hours.  These presenters did not want to think about those hours since it was not their program and did not seem to realize that if a person is taken out of the sheltered workshop environment and placed into a supported employment situation there would be a huge void in these people’s lives.

 

As with behavior modification techniques one needs to have a replacement behavior in place prior to removing the “offending” behavior.  I would think that in this situation, one would need to have replacement activities in place prior to removing hours of structured time.  This major issue does not seem to be a concern for those who advocate for supported employment.

One often hears about people “volunteering” prior to having a paying job.  What one doesn’t hear is that volunteering for a person who needs 1:1 support is much different than a person without support needs volunteering.  If a person receives 20 hours a month of support – that support is used for either “volunteer” or employment.  It’s not as if the person who needs support can volunteer and fill their time up that way.

What I think that people are missing is that many of these people with high support needs also need support for recreational activities and all activities of daily living.  When support is taken away for a great majority of the time that they had support, who will step in and provide that support?  If there is only money to provide for 20 hours of supported employment/volunteer time a month, where is the support going to come from for the majority of hours outside of the employment/volunteer time?

 

Many of the people who are employed in sheltered workshops need 1:1 support for many activities of daily living.  Many also need frequent interpersonal interaction to keep them focused or on task.  Many also need the support of others to manage their time which includes helping with recreation and other aspects of life which are not “employment.”

Recently I also attended a workshop regarding transitioning to adulthood for people with intellectual disabilities.  The issue of employment came up and a counselor from the Department of Vocational Rehabilitation (DVR) pointed out that when a person with an intellectual disability works they need to have opportunities outside of the job for social and recreational engagement.  This DVR counselor stated that many people with DD lose their jobs due to the fact that they have no other social outlets and start to use the job place for their recreation.

I’m afraid that with the limited hours that a person who has supported employment has with a “coach” puts great limits on the availability of supports for other aspects of the person’s life.  In a sheltered workshop situation, people are able to work in groups with support but do not necessarily need the 1:1 support which they would need in a supported employment situation.  Therefore, the funds for the support person can be spread out and shared with others.  This will enable more people to have employment and activities for more hours a week than if each person had their personal 1:1 supported employment “coach.”

The term “coach” is a little misleading also.  The people with intellectual disabilities who need this high level of support are not people who one would train to do a job, work with them for a set number of hours and then the employee will be trained and able to work independently.  These are people who will need 1:1 support for all hours of their employment for the length of time that they are employed.  This is a life-long disability and most of the people with this high of support need will always need this high of a support need.

I fully expect to hear from many who do not agree with my assessment of the situation.  I’d love to hear from you and hear how these issues that I raise can be overcome.

The issues of supported employment versus sheltered employment are very much like the issues of concern with a continuum of care.  We need to realize that the population of people with intellectual disabilities is heterogeneous.  We need to provide programs that benefit all – no matter what their abilities are.

 

 Below are some comments from people in the community:

 

As more residential centers close and DD centric programs are eliminated it is much easier for DSHS to deny services

The services our tax dollars buy must be used to meet the unique needs of individuals, not all of whom will find employment at Microsoft. Residential services, activity services, all services must fit the needs of individuals not the pipe dreams of DOJ lawyers and bureaucrats in DSHS and the county DD offices just keeping their paychecks, pensions, and power.

Since when are the consultants better at determining our kids futures than the parent/guardians and DSHS case managers, most of whom really do care

I’m right there with you, and having my son in a program that give me 3.5 hours a day for 5 days a week would be fantastic! He doesn’t care at all about getting paid, or about having some kind of employment that those well-intentioned folks you mentioned seem to prize so highly

DSHS has refused to let anyone else into the sheltered program for several years turning away a number of families.  A few KAT clients have found jobs, some moved out of the area and a couple have died.

The reimbursement is not the point, safety and having a purpose are more important

Most of the clients work about a 16 hours a week, 5 days 3.5 hours each day, each has a pathway to independent employment plan, realistic or not.  The Boeing contract provides almost as much as DSHS and allows every Kitsap Applied Technology employee to receive a paycheck each month based on a piece rate, our son’s pay isn’t much but it is better than sitting at home watching Muppet videos.

I am sick and tired of explaining these needs to the well intentioned, altruistic folks who have no special needs kids or have kids that are performing in top 10% of the DD population.