How do I spell relief?

C-A-R-E-G-I-V-E-R

 

Recently I was asked to write an article for Frontline Initiative, a publication of the National Alliance for Direct Support Professionals.  The specifics of this issue are “Psychiatric disabilities and intellectual or developmental disabilities”  – an area that I am very familiar with.

 

Today, I received my hard copies in the mail and would like to share my story of thanksgiving about two wonderful people (and their wonderful spouses) who “get” my son!

 

Frontline Initiative article by Cheryl Felak

Gretchen and Kelly came from Spokane and visited Thomas - This is after their trip to Red Robin for lunch!

Gretchen and Kelly came from Spokane and visited Thomas – This is after their trip to Red Robin for lunch!

 

 

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Gretchen and Thomas (maybe 2010?)

Kelly and T - 15 years

 

 

Kelly and Thomas at Thomas’ 15th Birthday Party – which also happened to be Mardi Gras that year!

Alex and Thomas Christmas 2010

Thomas and Alex at Christmas Eve Dinner Celebration 2010

Alex included Thomas in his wedding by asking Thomas to announce the closing Hymn.

“Lord of the Dance”

http://www.youtube.com/watch?v=6V9YTfqOrrU&feature=youtu.be

Thomas and James at Alexes wedding

 

Thomas getting ready to make his closing hymn announcement at Alex and Maria’s wedding, June 16, 2012

 

Deinstitutionalization – a National Disgrace

Did you know that if a person has a developmental or intellectual disability they can have all the other diseases, illnesses and conditions that everyone else has?  I know this seems like common sense but at times I do not think that the Division of Developmental Disabilities  (DDD) understands this.  When it comes to the dual diagnosis of Intellectual Disability/Developmental Disability (ID/DD), as a cost saving measure for the DD Silo, DDD is booting out clients with DD who happen to have a mental illness.  DDD states that the problems are caused by the mental illness and not DD!

There are problems with service delivery within the DD system but from what I read and see these problems are not nearly as bad as in the mental health system.  So, rather than caring for these extremely vulnerable citizens in at least one system, they are being sent to a system which is much worse, where they will surely die.  Where is the humanity in this?

Right now there is a gentleman who is fighting for services.  He is 30 years old and has a history of developmental disability, he has been served all his life through DD and had a HCBS waiver to move into a supported living arrangement.  We all know that transitions are difficult and this transition caused a crisis.  This man is currently in the state mental hospital in the wing for people with DD.

Can you believe that our state made him ineligible for DD services stating he has a mental illness?  This man had an assessment done in March 2012.  One week the family received a notice, based on this assessment, that he was eligible for the CORE Waiver and listed all the services he would be getting.  The next week DDD sent them a notice (based on the very same assessment which qualified him!) terminating all services.  Is this how our state treats those in crisis?  They take away the services?

This is just one example.  I am contacting many families and we will be putting together our own report on our experiences.  It will be shocking.

Guns and Mental Illness written by New York Times Op-Ed Columnist Joe Nocera, spells out some critical information.

“”Ultimately, the article I wrote was about how the “deinstitutionalization movement” of the 1960s and early 1970s — a movement prompted by the same liberal impulses that gave us civil rights and women’s rights — had become a national disgrace.”

and

“The state and federal rules around mental illness are built upon a delusion: that the sickest among us should always be in control of their own treatment, and that deinstitutionalization is the more humane route. That is not always the case.”

The risks of deinstitutionalization (in both the DD and the Mental Health systems) greatly outweigh the benefits – it’s time the program planners and policymakers realized this truth.

Medical Conditions and Behavior Problems – Health Issues for Individuals with Developmental Disabilities

Medical Conditions and Behavioral Problems

FEBRUARY 16, 2011 LEAVE A COMMENT

Writing in 2005, Ann Poindexter noted, “After forty years of working with individuals with mental retardation/intellectual disability and behavioral/psychiatric problems, I continue to be impressed with the importance of medical issues in the presentation of behavioral symptoms” (p. v).  Although it may not be offering new information to say that physical distress caused by non-psychiatric medical problems can provoke changes in mood and behavior in people with ID, this is a concept that bears repeating.  Often the root of a psychiatric referral of a person with ID will turn out to be an undiagnosed medical condition.  People with ID may lack the verbal ability to communicate their discomfort or distress.  They may even lack the cognitive ability to identify the source of their pain.   Health problems that may cause or worsen behavior problems include ear infections, premenstrual pain, sleep disturbances, allergies, dental pain, seizures, constipation, and urinary tract infections.

Addressing the need to assess for medical factors in the context of a psychiatric assessment, Hurley et al. (2007) write in the DM-ID:

Medical problems are often the source of the chief complaint for the mental health interview for an individual with ID, in contrast with the typical  interview for intellectually normal individuals (who can understand that they have a medical condition that could be associated with a mental disorder, such as chronic pain leading to Depressive Disorder).  For persons with ID, the association of medical condition with mental disorder is not generally understood — not by family, not by direct support professionals, and not by clinicians. (p. 17).

A recent study (Charlot et al., 2011) finds that “individuals with ID admitted for inpatient psychiatric care exhibited high rates of medical problems, and these were associated with duration of inpatient stay.”

Improved assessment and treatment of medical conditions may prevent unnecessary psychiatric referrals and may improve the quality of life of many individuals with ID by relieving their prolonged distress caused by undiagnosed and untreated medical conditions.

Robert J. Fletcher, Founder & CEO, NADD

References

Charlot, L., Abend, S., Ravin, P.,, Mastis, K, Hunt, A, & Deustch, C. (2011). Non-psychiatric health problems among psychiatric inpatients with intellectual disabilitiese.  Journal of Intellectual Disability Research55(2), 119-209.

Hurley, A.D., Levitas, A., Lecavalier, L., & Pary, R.J. (2007). Assessment and diagnostic procedures.  In R. Fletcher, E. Loschen, C. Stavrakaki, & M. First (Eds.), Diagnostic manual – intellectual disability (DM-ID): A textbook of diagnosis of mental disorders in persons with intellectual disability.  Kingston, NY: The NADD Press.

Poindexter, A.R. (2005). Assessing medical issues associated with behavioral/psychiatric problems in persons with intellectual disability.  Kingston, NY: The NADD Press.

 

This is one reason why it is so critical to have medical and caregivers who are stable and understand the population which they serve.  People with ID present issues very differently than those of us who are “typical” (whatever that is) .

 

The Medical Home Model, as researched and described in the report Medical Care Task Force Jan 2002 , is an example of how we

can achieve safe, quality and cost effective care for our most vulnerable populations.  Please share this report with others.

How to Provide for Community Integration

Supported employment is becoming the only program that will be available for people with intellectual disabilities after the age of 21.  This program is replacing the sheltered workshops and in so doing is eliminating a very important part of many people’s lives. Please do not misunderstand the issue that I am trying to convey – read the story before making comments.

While supported employment is also a needed and critical program, it does not best serve the needs of many of our loved ones – particularly those with a dual diagnosis of Intellectual disability and mental illness of mania, psychosis or schizophrenia.  The population with a dual diagnosis is in need of a program which provides a stable setting every day of the week for several hours.  They do not do well in settings in which they only have support a few hours a week and then are left to their own devices to manage the rest of their time.

As a parent of one of these people with a dual diagnosis, I know that the supported employment program will not be the program that serves his needs.  There are so many opportunities to include him in community activities in other programs but if all the funds are used in the supported employment programs, there will be nothing left for those who need another type of program to function optimally.

I was recently at a local meeting area which has several eateries which serve a commons.  I witnessed a young man who was being supported by a “coach” in his job.  He clearly had no interest in the job, was spinning around, looking at the ceiling, while the coach would take a tea bag, put it in his hand and then he would drop it in the correct bin.  The coach was attempting much hand-over-hand work with him but it really was her doing the work.  She then picked up the bin of dirty dishes; put it on the push cart and then they both pushed the cart out of the commons.

This scenario made me feel really sad.  If a person has only so much support to enable them to be out in the community and experience life, I would much rather have my son experiencing opportunities that he enjoys and which get him out with people in a more natural way.  These activities are going grocery shopping, going to the library, going to a restaurant, walking to the park, going to church – these are all normal activities which he greatly enjoys and interacts with all types of people.  These are activities which he needs a 1:1 support person to help him.

Other activities that my son greatly enjoys are meeting with people and being in groups.  This is what the “sheltered workshop” provides for him.  No, he doesn’t do much work there and it’s not training him for a future job but it does provide stability, group activities which he craves, interaction with people, and structure to his day.  These are all critical components to his care which will be gone if the sheltered workshop is closed.  The sheltered workshop is not a sweat shop nor is it slave labor.  He does learn skills and is capable of some work with 1:1 support at all times. He gets paid for the piece work that he is able to accomplish but that is definitely not his motivation since he does not understand the economics of having a job and supporting himself.

If my son was only allowed 5 hours a week of a support person, it would be much more beneficial to him to use that for activities which he enjoys and activities which he chooses rather than a type of “employment” that means nothing to him and is only there to make others feel good that they are accomplishing something.  This type of “employment” would be torture for my son.

My son and many like him are not going to be cured and will not be “getting better”.  Yes, they are able to learn but will always need a high level of support.  They are not people who can be taught a skill and then be sent off independently to do that skill.  Even when they know how to do something, they need the constant support to maintain focus and follow through.

People like my son are very much like people with Alzheimer’s disease.  A similar condition is dementia.  Dementia, which my son has, is a brain disorder which obstructs and diminishes cognitive performance such as memory, judgment, personality and social function.  We need to be realistic in the choices that we make with services.

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

Manic Psychosis tape

We hear so much about people with developmental disabilities.  Many advocates take family members to Olympia to meet our legislators.  There are many of us who have family members who are not able to go to Olympia to advocate for themselves.  I have been asked, if Fircrest is so great, why don’t we see residents down in Olympia?  This question was asked of me by one of the executive directors of a chapter of The Arc in our state.  Obviously she is unaware of the issues which most of our family members whose home is in an ICF/DD face everyday in their lives.

For an example, I am publishing this audio of my son.  What you will hear was very typical for every day in our house and would go on for hours and days.  Maybe after listening to this, that particular Arc executive will understand why ICF/DD residents are not able to advocate for themselves.

This is my reality.  Sound quality not the best (sorry) and audio starts at 1 minute