DDD Errors and misinformation

Due to continued reliance on the reports from DDD and DSHS, I am now writing daily reports informing our senators of the flawed data and analysis in the information they are receiving.  If anyone would like sources of the original documents and data, let me know – I have them.

Letter from a parent

Here is a letter that was written by Rebecca, Forrest’s mother.

Good Morning,

This email is a response to another parent on the autismking list,( ran by
the ARC) of course my email was not posted on their list. I am sending you
all my email, in hope that it will help.

When I ask for services for my son I am always told the same thing.

³We donot have services for non verbal aggressive autistic people and if your son is aggressive we will call the police to have your son arrested.² Now, not only is my son denied services most places that serve the rest of the DD population but now Forrest is at extreme risk to end up in jail if he assaults and, of course, Forrest will because that is the kind of autism he has. So, then they will throw a person who has autism and is non-verbal in a cell with bars with other inmates. We don¹t treat animals this way. But children like mine who are on the lower end of the autism spectrum are treated this way.

We have not seen ³Wretches & Jabbers² although we heard it was a wonderfulmovie. It is just to close to our own lives to watch. We find that many ofthe decisions being made are based on stereotypes left over from the days when all moms with autistic kids were called ³ Refrigerator Mom.²Thank-you for seeing what the truth about autism is as well as the struggles that parents with non verbal autistic children like ours encounter. Andthank you for recognizing that my son is a person who deserves to be treated with heart and as a member of the human race.

Glad you like the movie, and thanks for reaching out to me.

Rebecca

If anyone wants to cross post my email. Go for it.

Forrest is now a success story in my mind – knowing the  torture that he and his family have experienced at the hands of agencies whose job it is to advocate for our citizens like Forrest clearly illustrates the discrimination that is still being practiced in our lives.  Forrest now lives at Fircrest, one or our states 5 RHCs.  Since moving to the environment that supports him and keeps him safe, he has developed his  artistic abilities.  Forrest’s photography touches my  heart.

Censorship and Civil Rights (Revisited)

Due to the censorship, shunning and monopoly practices of the Washington State Developmental Disabilities Council and some of The Arc chapters in our state, I will repost from their blog some postings that need comments so that people can be informed with more facts – not just the twisted snippets that DSHS, DDD, the DDC and The Arc chapters want people to know about.

In reading through the information, it is always good to pay attention to who is saying what – I hear the above mentioned groups saying things such people need choice – yet they are advocating to take away choice.  The hypocritical nature of their call to action really needs to be challenged.

I believe, and please correct me if I’m wrong, that the groups who support a continuum of care have not advocated taking away services from anyone.  These grassroots groups see that the services should be based on the needs of the client, should be cost-effective, should be safe and healthy choices for the resident and that the family and/or guardian are paramount in helping the resident decide what is the best option for that person.

I understand that many of the people who work for these agencies need to keep the party line and can not violate it – they may loose their job if they question it.  I do wonder though, how many secretly have questioned the issues and have come to different conclusion privately.  We may never know until the walls are broken down.

Please pick up Real Change

“Cuts hit kids:  State may move disabled children” written by Cydney Gillis, staff reporter

Thank you, Cydney, for your article regarding the proposed eviction of some of our communities most vulnerable citizens.  Your article speaks to a few issues but I would like to clarify some important points to add to the story:

Residential Habilitation Centers are necessary for the continuum of care that our high needs residents require.  Many of our citizens with developmental disabilities also have a mental illness which increases their care needs.

The residents who live in our Residential Habilitation Centers are not easy people to care for.  I know from firsthand experience as a healthcare provider and parent of a 17 year old boy who lives at Fircrest, what a toll caring for a family member with developmental disabilities is on both the family and community. Many of these residents also have a diagnosed mental illness on top of their developmental disability.  This could be Bipolar disorder, Explosive Disorder, OCD, Psychosis, Dementia, just to name a few.  The addition of a mental illness diagnosis greatly increases the care needs of these residents.

DSHS has been denying admittance to many people whose family or guardian requested a move into an RHC.

It is federal law that if an eligible person or their guardian requests to move into a Residential Habilitation Center (RHC) the state must honor that.  Washington has not been doing this; in fact they have set up a diversionary team to keep people from moving into the RHC.  The issue is not that there is not space or capacity for them – the issue is that the State of Washington is not following the federal law.

Many families in the past several years have specifically asked for placement and the Department of Developmental Disabilities had said “no”.  In some instances, they have even refused a community residential placement and at least one family with a 13 year old boy to “call the police.” Other teenagers have ended up in jail rather than being admitted to the RHC.

DDD has records of these diversions in a proviso budget but they do not make this information public or acknowledge the existence of the program.  They have not followed state law and have not provided the legislature with quarterly reports on this program.  The last report documented was for the 6th quarter of the 2007-2009 budget. [1]

DDD does not report the true cost and true comparison in any of their documents concerning the RHC cost compared to “community” cost.

 

Annual cost of care for RHC Resident

Comprehensive care which includes:

Personal care, On-site medical, dental, nursing, PT, OT, speech and behavior therapy, nutrition services, laundry, transportation, employment, recreation, worship services, socialization, community outings, on site back-up and more

 

$172,000

 

Annual Cost of care for similar client (high acuity) in a community setting

(actual figures from DDD – average of 30 actual client costs)

This actual dollar figure includes residential and personal care – NOTHING MORE

 

$229,000

Assessments for the care needs (acuities) of the residents are not accurately reported by DDD

The DDD data for care needs (acuities) are much higher in every area and more people have multiple high acuity areas combined in the RHC as opposed to the “community.”  This higher need requires more staff and backup support to maintain health and safety – not only of the residents but of the staff. [2]

What you will find in the DSHS report is that the “key points” are not supported by the data.  Here is a chart which takes information from the actual data.  DSHS state that “RHC and Community” are one entity in their “key points” when in fact they are two separate entities. [3]

Another care needs issue is 24 hour awake care – DSHS looks at this as similar care across the board.  The acuity needs within this category vary widely from someone who may may just need assistance a few times a day but needs someone in case of emergency verses someone who needs intense and constant 1:1 personal interaction.

An RHC is indeed a community environment

Community is the environment in which a person lives, socializes and participates in life events.  The residents of an RHC are in a community that is the environment which best serves their needs.  DSHS has an ideology that these residents are isolated from community.  In fact, the opposite is true.

The residents are free to roam the campuses safely, they are not locked in, there are many outings every day for various residents and many participate in events in the community at large. One reason they are able to participate in the community at large is that there is staff available to transport and accompany residents.

Residents have risky behavior and are unable to make choices that are safe due to their developmental age.  One needs to look at developmental age and ability of the resident to be able to understand consequences of choices.  This is not dependent on the chronological age of the resident

Many of the residents who live in an RHC tend to wander.  This is a huge problem with living in a community setting.  Above is a photo of Fircrest Duplexes and two photos of group homes in Seattle.  This is not an uncommon neighborhood situation for group homes.  When you think that the residents are basically the developmental age of a 1-2 year old, do not respond to verbal cues and run off, it is clearly evident how dangerous living in some of these situations could be.  There have been residents who have “chosen” to go out and staff has allowed them to choose.  The emergency medical response teams are very familiar with these types of incidences.

In a community home, the staffing ratio is generally 2 staff: 4 residents or 2:6. With this ratio, isolation will occur because there will not be adequate staff to both stay home and take residents out into the community at large.  This can be a major set up for behavior escalation, resident and staff injury.  The only back up for community residences is the 911 emergency call systems.  This system cannot handle the increased calls coming in for non-emergent medical issues from community residential group homes.  [4]

DSHS does not report correctly about the trends in residential care across the nation.  They consistently state that Washington is behind the trend of closing institutions.

You can see by the chart below that Washington is “Below Average” for number of congregate care residential centers for 16 or greater residents in both number of settings and residents per setting – much different than what DSHS reports to the public.[5]

Congregate care setting by state on June 30, 2009 (Placeholder6) Number of Congregate Care settings (16+residents) Average # of 16+ congregate care settings Number of residents Average  range of number of residents per congregate care setting Average number of residents in each setting
US Range 0-95 16 0-4306 19-339 91
Washington 15 1102 73

DSHS looks at friendships in a very different way than most RHC residents and their families.  Generally people enjoy the company of others with similar interests in activities or recreation.  By moving these residents to the “community”, DSHS is denying them the right to have friends who are similar to them.  When in a community setting, they cannot share services between homes or even have two homes on one street.  This greatly reduces the ability of the resident to have relationships with others besides their immediate housemates.  Many of the residents on the RHC campus have many friends – staff, family members and other residents that they regularly interact with on a daily basis.  DSHS wants to take this basic human right away from them.

We do not advocate that any one type of person should move into an RHC but we believe there should be the continuum of care available. We believe the person and their treatment team need to decide which the best option for that person is and be allowed to choose.   Without the supports of our RHCs, our whole community will suffer greatly.  That is our concern – we are looking at the whole continuum of care taking into account COST EFFECTIVNESS, HEALTH AND SAFETY of everyone.

The Arc of King County

Once again there appears to be censorship, shunning and dismissal of the concerns of some advocates. We have had discussions regarding these issues previously. In light of or our current budget crises and the attempts to serve the most people with fewer dollars, I would think that it would be critical to listen to those who might have innovative and constructive ideas.  What is happening though is shutting down any discussions that do not parallel the “mission” of The Arc.

I have raised several questions which continued to go ignored and unanswered.  The newest issue is that my comments will not be posted on The Blog from The Arc of King County.  Even though my comments are from the perspective of an advocate for a child with profound disabilities, which according to your mission, you support, I am not allowed to question or share concerns.

What is interesting about this is that The Arc of the United States posts my comments and appreciates the ability to discuss issues.  They, also, state they follow the mission, but are not hiding behind it afraid to confront tough issues.  Does The Arc of King County not share this same philosophy?

I can also tell you that I have uncovered so many flaws, false representations regarding costs and acuities, quality assurance problems that are being covered up and sugar coated by DSHS, DDC and many of the prominent advocacy groups.  I find this deception so irresponsible on their part and am outraged at this.  These agencies are reporting to our legislators and public these inaccuracies as fact and any questions to their validity is ignored and banished from discussion.

I would like to think that particularly, now, in this horrible crisis, that it would be time to break down these walls and listen to the people who advocate for those who can not speak and be their own advocates.  There are so many viable options that are not even heard due to this line in the sand propagated by those who are supposed to be advocating for them.  Instead, these groups are advocating for the demise of a system and community that has saved lives.

Not only will the process that is being promoted by DSHS, DDC and The Arc, destroy a system that can work (needs some tweaks for sure) but in the process will also hurt ALL people with disabilities due to the agenda that is being followed without question.  This is what I, personally, find so despicable about disability advocacy by those who run the monopoly.