Tag Archives: Fircrest

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.

 

 

Mud-Slinging Olympics

Mudslinging Olympics

My latest research regarding issues in the Shoreline School District and funding of high-needs special education students has uncovered so many inconsistencies that it will take some time to unravel the truth.

Aside from the school district’s budget woes, for which some of our most vulnerable children are becoming the scapegoat for, I have discovered some gems in going through archives.  Now with our state budget balanced and our Developmental Disabilities community coming out of the process better than expected from the beginning of the legislative session, I am very thankful to all who advocated for the needs of our most vulnerable.

In order to keep this momentum going, we must unite and stop the mud-slinging from one faction to another.  We can only improve by uniting and realizing that we need a continuum or care model.  In my research, I have come across so many issues that show fault with both (community and institution) systems and also many that show the benefits of both systems.  Neither systems is better or worse for the whole population – we need both for safe, quality and cost-effective care.  We need both systems to provide for the our community members based on their assessed level of supports and also to adhere to the U.S. Supreme Court Decision Olmstead and the US DD Act.

Below is part of an Editorial from “The Enterprise” from Friday April 28, 2006.  The Enterprise was the local Shoreline/ Lake Forest Park newspaper operated by The Herald, which printed it’s last edition on October 28, 2009.

April 28, 2006 – Editorial

“A half-century ago, the one-size service was institutionalization, coming in the form of facilities such as Fircrest School in Shoreline.  More recently, the pendulum has swung toward community-based residential care, houses in neighborhoods.  Proponents of both approaches make similar arguments that their plan offers more efficient and better care.  Each side also points to the abuses and lapses of care under the other system as evidence of the correctness of their crusade.

The reality is that no single approach can possibly be appropriate for every individual.  Abuse and lapses in care are evidence that any system is at the mercy of the frailties of humankind, frailties that must be braced bur are unlikely to be eradicated.

Recently, supporters of several former Fircrest residents filed a lawsuit, claiming a move to another intuition did harm to their charges.  On the other hand, the state is in the midst of investigating several group homes over concerns of inadequate care.

One need only to look at these examples – and many others – to see past the rhetoric and see that one size does not fit all and that a full spectrum of care choices must be available.”

My hope is that advocates for people with developmental and intellectual disabilities across the spectrum read this and understand that what we need is a spectrum to best serve this population.  The spectrum is the way to provide stability and sustainability.

Please, for the best interest of those who we are all trying to advocate for, realize that a spectrum is needed to best serve ALL people with developmental and intellectual disabilities and that CHOICE is mandated by Supreme Court Decisions and Federal Law.

About the picture:

Mudflad Olympic Games – maybe we should do something like this as a fundraiser and stress reliever for advocates?

Brunsbüttel, Germany, August 30, 2009–A competitor throws a ball in the annual Mudflat Olympic Games, a charity sports event played exclusively in mud.

One of the games is the eel relay race, during which runners carry a fake-eel “baton” made of a bicycle tire’s inner tube filled with rotting fish guts, rice, and a vibrator, according to the German publication The Local.

— Photograph by Krafft Angerer/Bongarts/Getty Images

Children’s Mental Health and Developmental Disabilties

After watching the House Health and Human Services Appropriations and Oversight Committee Work Session from December 1, 2011, I really saw that the mental health folks are much more aware of the cross systems issues and the problem with “silos” that the DD folks seem to be unaware of.  DDD really needs to look again at the services that their clients receive and share accurate data.  The data they share is so full of inaccuracies that those who use DDD and DSHS data as their facts (The Arc Chapters) are only hurting the very people who they are advocating for.

 

This is clear by the crisis that we have dug ourselves into.  There was NO cost savings from closing Frances Haddon Morgan Center as many were led to believe.  Now instead of using that “savings” for more in the community setting, those who are in the “community” settings are going to lose even more – This treatment is inhumane and is done by the very agency that is set up to protect our most vulnerable.

 

I wish that members of the The Arc chapters would look at some of the data that I have been able to gather and realize that what DDD is giving them is misinformation.  Rather than censoring me or accusing me of abuse because I have questioned the DDD and DSHS reports, it would benefit all of us if someone would actually look at this data and realize that what I have is critical information.

 

The fact that my questions to the authors of some of these reports and the administrators in DSHS and DDD are not answered  should be a big clue that there is information there that they do not want to acknowledge – I would assume because it would show that they are not being truthful in their approaches to policy.  If they were , I believe they would gladly answer my questions or at least tell me that I’m wrong.  I’ve not heard that I’m wrong either.

 

If anyone would like that data, I’m more than willing to share.  The more who are aware of this and who understand it, the better for ALL people, with and without developmental disabilities.

 

I will be posting another letter with some very specific questions that DDD and DSHS need to answer.

Resident hours per day charts

 

Thank you,

Imprisonment for people, death to some – It’s coming down to that –

Our state is in a crisis – that’s not news to anyone.  Some of the crisis is self-made from some “advocates” who have pushed inaccurate information to our legislators.  The false information and reports based on inaccurate data were utilized in decision making – decisions that are now coming back to bite us.

There are some solutions but people will have to acknowlegde some mistakes that were made.  Here is just one solution – retention of Direct Support Staff -

We need to think of Quality of Life for our citizens with developmental disabilties.  Having staff turnover rates up up to 44% is not only disturbing but dangerous and expensive.  Do you know that if we changed and tweeked the system just a little, we could save over $28,000,000 and improve the quality of life not only for residents but also for caregivers?

Do you know that moving some residents to small community homes will be imprisonment for them?  Without staff to care for them or staff to take them to appointments and community outings, they will be imprisoned in their homes – is this the type of life that you would wish on anyone?

One can clearly see there is a huge problem: Not even taking into account the effect on residents and the loss of knowledge and skills in relating to residents when staff leave, the lack of continuity in care (all which add to stress and increased behavior issues in residents), all the other issues with staff turnover that are seen in the business world are seen here too.

On average it is concluded that it costs about the annual salary of the person to replace that person – so given that, how much money could be saved in retention of staff (increased wages would help and would clearly offset the cost of staff turnover) which would then improve the quality of life.

Group Home Direct Care Staff make roughly $10.00/hour (some more, some less range is $8.55 – 13.62 in 2010) so that calculates out to about $20,000 for each person – so for 2010 in group homes that comes to $2,100,000 dollars on just staff turnover!!!!

Supported Living is $28,900,000

Now those are some ridiculous numbers – One of the keys to this problem is to look at staffing and how to retain the staff – This is what will not only save money but  improve the quality of life for EVERYONE!!!

Now is the time to think about new systems  – think outside the box (sorry for the cliche)

 The data for this chart was obtained from the DDD Residential Programs Staffing Wage & Turnover Study, years 2008, 2009 and 2010

Type of Program 2008 2009 2010
Group Home 48.1 44.3 39.2
Supported Living 44.7 37.8 35.8
SOLA 18.9 14.9 14.4

Jacqueline C. MacRae Therapy Garden

Friends of Fircrest is honoring Jacqueline C. MacRae with a Dedication Ceremony on Thursday, August 25, 2011 at 10AM in the Therapy Garden.

There is a lovely new bench sculpted by Pat McVay in honor of our appreciation for Jackie.

 

 

What’s the Better Deal?

Mama Bear is Showing Up!

Happy Mother’s Day -

Every one knows how ferocious a mama bear can be protecting her cubs and knows to get out of the way.  I’m feeling like that mama bear right now and getting madder and madder.  Someone is attempting to hurt my child – not just my child but the children of many of us and it’s time to step back or it won’t be pretty.

I’m tired of being nice and playing the game.  I’m tired of DDD case managers denying services to children and adults who are needing services and who are approved for those services yet DDD continues to deny them.  I’m tired of the  DDC acting as if they know what’s best for our most vulnerable citizens yet shunning and censoring information from the experts – parents and caregivers.  I’m tired of so-called “disability advocates” from The Arc chapters behaving as if they care about our most vulnerable citizens and I’m mostly tired of all people from those agencies deliberately causing harm to our citizens.

I can tell you that a DDD case manager wondered why I didn’t restrict fluids from my son so that he would not wet his bed.  This was not just a little wet, this was a monster wetting which necessitated laundering every bit of bedding every day due to being soaked.  This was not a case of simple bedwetting but a case of neurogenic bladder that only relaxed at night so that was the only time he could really empty his bladder – while he was asleep – the only time his body ever relaxed (that is if he did sleep.)

This is the same DDD Children’s manager who I overheard tell my son’s case worker “do not offer them anything.”  That was after a meeting I had with them while he was hospitalized his for the 5th time in Seattle Children’s Inpatient Psychiatric Unit, psychotic and manic.  We had looked at Fircrest for him, we and his healthcare team knew it would be the best place for him – particularly since we had been told that another hospitalization would not be approved.  Our son was 14 and the DDD Children’s manager said “DON’T OFFER THEM ANYTHING?”

What is wrong with this picture?  Whatever it is – it needs to change and I’m doing my best to make changes.  Just as Ed Holen and Sue Elliott from the DDC and The Arc say on their Olympia Insider videos on Youtube “Change is made by those who show up.”

I’m going to be showing up!

Special Olympics – Shoreline Stadium

What a great day yesterday – not only did the sun come out but there was a huge turnout of athletes for the Special Olympics Track meet at Shoreline Stadium.

It was great to run into people from all stages of life and events from the past years.  Our kids are growing up, joining different teams and branching out in various programs.  This was one place where you can actually experience the full continuum of needs and abilities of people with developmental disabilities.  It’s also so inspiring to see people of all ages participating in these events.

I came away from the meet very inspired – the joy expressed by the athletes is contagious.  We’re

looking forward to the next meet on May 14.

My Son Cannot be Cured!

As a healthcare professional, parent, citizen and disability advocate, I still do not understand the position of DSHS, DDD and prominent “advocacy” groups such as The Arc Chapters, People First and others.  These groups seem to believe that if you keep spending money and services on people with disabilities, they will become normal, function as normal and be productive as normal.  For some people this may be true and for those people I am very supportive.

There is another side to the story though – there are many of our citizens with disabilities who will never be able to be on their own, have a job with a competitive wage, own a house, cook their own dinner, or drive a car.  And you know what – they probably don’t care and wouldn’t even consider those things as part of their life – and that’s OKAY!

My son is one of these citizens.  He’s not normal, will never be normal, has no desire to become normal (he doesn’t even know what that is anyhow) but this in no way diminishes his worth as a beloved human being.  He is absolutely perfect the way he is.

In addition to his incredible worth as a human being, my son is about the happiest person that you will ever meet – he finds joy in so many aspects of life and just thinking about what brings him joy, brings me and all who know him joy.

I believe that if someone wanted to spend the millions of dollars on him to try to train him for a “real job” or to try to make him feel like he’s part of the community; they are wasting everyone’s money and time.  Not only that, they would be irritating him since he is totally incapable of fitting into a “normal” type of life.  I’m tired of people telling me that “if only he had the right supports he could do normal things” – he’s perfectly content with what he can do and works at his pace learning new things that matter to him.  Why can’t society let him live his life rather than trying to make him fit a mold that is beyond his capacity to fit?

Also, as a health professional, parent, citizen and disability advocate, I would much rather see the public funds that are overspent on trying to get people to be normal, spent on more productive services – think of the good that could come to the whole society if these dollars were spent on education, health care, public services that benefit more people than just a few that will never be able to live up to the expectations of “normal?”

I do believe in disability advocacy but this movement has gone way too far in trying to overcompensate.  It’s time to swing back to sanity now and realize that there is a continuum of abilities and that we need to honor and cherish that.   We seem to accept everyone else for who they are, why can’t we accept those with profound disabilities for who they are too?


Quality of Life?

Many People ask about the Quality of Life of our citizens whose home is an RHC community.

The residents in the RHC community have a quality life – one that ensures their health and safety, social and recreational activities and community interaction.  These are qualities that would not be available to many of these residents in various other environments.

Above all, the human rights of our citizens are protected and celebrated on the RHC community.  This is something that can not be said about residences in many of the “community” residences that Susan Dreyfus, DSHS Secretary, and others want to exile our residents to.