DDD forces families to make “Sophie’s Choice”

We are uniting and you will hear more of our stories of survival.  The Division of Developmental Disabilities (DDD) does not want our families to meet and build a community or allow our vulnerable children to  live in safe, stable and sustainable community.  Sounds strange saying that about a department which claims to value community and families and strives to keep citizens in their communities, doesn’t it?  It’s unfortunate but true that DDD, the agency which we need to work with to get services for our vulnerable family members with intellectual disabilities seems to do all it can to create crisis and chaos.

 

We are not survivors because of the help and assistance which DDD provided but because we fought unbearable struggles for our children and family members.  We fought DDD so that our family members could receive the “allowable” services on the Home and Community Based Waivers they were on.  We fought against DDD telling us to call the police for crisis care.  We fought against DDD telling us to restrict fluids so that our kids would not need extra absorbent diapers (for a neurological problem) .  We fought against CPS reports about the methods that we, as families, needed to do in order to keep our children safe from harm (putting special locks on doors for instance) .  We fought for allowable “home modifications” so our families could be safe.

You do not hear from those who are still struggling and in crisis.  I believe DDD wants to keep it that way.  Those families probably can only muster enough strength to barely make it through the day and survive – they have no energy or time left over to make their stories heard.  They barely manage (if you can even call it that) in isolation.  That’s the way DDD wants to keep it.  I know, I was there.

 

This is why we, as survivors, must tell the story for them in hopes that they, too, may become survivors, succeeding at stable, sustainable care for their loved ones.

 

Examples:

#1 – teen grew up in Seattle.  Family and healthcare team requested out of home placement at Fircrest Residential Habilitation Center (6 miles from the family home).  DDD DENIED.

After continued crisis and multiple hospitalizations and total family breakdown with the child at age 15 in his own crisis, DDD did say that child could possibly be admitted to Yakima Valley School ( YVS) (144 miles away from the family home) or Frances Haddon Morgan Center (FHMC)  (24 miles from home via hour long expensive ferry ride or 70 miles via highway).  DDD continued to deny admission to Fircrest (even short term or respite) to Fircrest which was in this child’s home community.

Family chose to admit son to FHMC (2009)  then petitioned the Division to move him to Fircrest due to continued health problems of parents and siblings which made it extremely difficult to visit son at FHMC.  Request to move this child back home to the community in which he grew up was granted after one year.  He currently lives at Fircrest, is stable, healthy and active in his home community.

#2  Family lives in Bremerton ( a mile or two from FHMC) yet DDD placed this teen at Fircrest (2008) prior to the closing of FHMC and they were still admitting teens here (see #1 who was admitted in 2009).  Family had been denied placement and was told the child would have to go to YVS (194 miles from family home.)  Child was able to be admitted to Fircrest (40 miles from family home where he currently lives in his community at Fircrest).

#3 DDD palce child at FHMC (90 miles from home) when Fircrest is 18 miles from the family home.  Child now lives at Fircrest due to FHMC closure.

#4  DDD place child at FHMC (again 90 miles from home) when Fircrest is 18 miles from the family home.  Child now lives at Fircrest due to FHMC closure.

 

Again, these are just 4 examples yet do they exemplify DDD attempting to keep our youth in their home communities?  This is not due to not having available resources and services in the home community.  As you can see, there were alternatives for each of these families which would have allowed their child to remain much closer to home than the placement that DDD finally agreed to.  We are gathering more so that people can hear the true stories of these families in crisis.

 

Currently, we are facing an issue with an 18 year old who is at Fircrest on a short term stay.  There are no safe alternatives in the community yet DDD is denying the requested admission to Fircrest.  In just the short time that this boy has been at Fircrest he has stabilized and has started to sleep through the night.  He is feeling safe and at home due to the support needs that he requires being available.  The family has requested that he be admitted.  This boy has been on the CIIBS Waiver, a federal HCBS waiver which states the family has the choice of in=home or institutional care.  The family has chosen institutional care after in=home care failed miserably and put this boy and his family at great risk of injury.  DDD is denying admission – based on age.  This is discrimination.  There are no other safe alternatives for this boy yet DDD is planning a discharge.  To where?  We will find out what their plan is this week.

 

Stay tuned.

 

 

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.