“He’s 13 years old, autistic” – Austin Jenkins

Thank you, Austin Jenkins, for writing your article “He’s 13 years old, autistic and stuck in the hospital for the holidays. He’s not the only one. (KUOW.org, December 15, 2021).

This issue has been developing for many years and it should come as no surprise to those who have been involved with Developmental Disabilities and the limited resources, tangled opinions, and even more tangled politics that are the driving forces behind decisions and reports provided to our legislators to make changes to our state’s laws.

The passage of Senate Bill 5459 in 2011 was one such bill that directly affected supports for our youth (21 and under). This bill essentially eliminated in-state options for those with very high and crisis level support needs – necessitating the need to send these children out of state – far away from the natural supports of their family and local community members.

The final bill report can be found at this link but the summary is quoted below.

Summary: Persons under the age of 16 may not be admitted to a Residential Habilitation
Center. Persons between ages 16 and 21 may be admitted for short-term crisis or respite
care.

KUOW asks for feedback on their stories.  Today, I submitted the letter below. There is much more that I could add but I hope this prompts Austin Jenkins to ask a few more questions, speak to a few more people and reach out to individuals – not the agencies which helped to create this crisis – as to possible solutions that we believe would be beneficial, not only to our family members but for our community as a whole. 

 To KUOW:
 

“A move to one of the state’s four Residential Habilitation Centers for people with developmental disabilities has also been ruled out. They won’t take a 13-year-old”  Why not?  This would be a great question to ask and may be a very viable solution to start to address this growing crisis.   answer to this whole problem.

It’s more than shameful how our state is unable to live up to our constitution and provide appropriate supports for this population  Washington State passed a law in 2011 which prohibits those 21 and under from receiving these supports in our community.  This bill, highly promoted by The Arc is one of the major reasons why families are forced to “choose” supports far away, separating their child from their families and communities.

By removing the choice of utilizing the intermediate care facility option (Residential Habilitation Centers) which have physical space and are currently open in our state, this bill clearly discriminated against our youth who could have greatly benefited by the supports and services at one of these campus settings which have specially trained staff to help habilitate the person so they may return to their community and a less restrictive environment.  This legislation was highly promoted by The Arc and the Developmental Disabilities Council, agencies which are given public funds to advocate on the behalf of our community.

Robin Tatsuda, with The Arc of King County misses the point of how she and others trace the growing problem of youth stuck in the hospitals too.  Unfortunately, without addressing the history of the crisis, we will continue to make the situation worse.  This can be witnessed today as these organizations continue to vehemently advocate for closure of any type of support they define as “institutional” – regardless of the choices of those utilizing these supports and finding them beneficial.

At the time when this bill was in legislation, I was in strong opposition to it.  I addressed this very issue of age discrimination with the Secretary of DSHS at the time (Susan Dreyfus) and she looked me straight in the eye and said, “parents still have choice, they can send their child to another state if they want these services.”    I guess she really meant that because that is what has happened quietly over the past 10 years.

That cruel statement brought me to tears – and still does. While I fully understand an ICF may not be the choice a family would choose, it is a much better choice than what is currently “offered” by our state -that of being confined, restrained (physically and medically) in an isolation room in a critical-care hospital, having a food tray slide through a hole in the door 3 times a day with minimal human interaction.

As a parent of a youth needing these supports, I would be forced to choose an out-of-state option too.  But I was lucky – my son needed this level of support before the discriminatory law was passed. 

Living on a campus setting, being allowed to go outside, interact with others as one is able to, go to the local public school, have vocational training, interact with the community at large and stay connected with one’s family and have other appropriate supports at an ICF can be beneficial to the person and their family.  It can provide time for healing, supports for building new skills and supports to maintain those skills.  It can buy time in a more integrated setting than a hospital isolation room, until an even less restrictive but appropriate community home or pocket neighborhood can be developed.

I know that allowing our families to choose a local, in-state option (which does not need to be built from the ground up – it already exists) can save lives and prevent extreme trauma that these individuals and their families are now experiencing – trauma that they will need to live with the rest of their lives. 

With this crisis only getting worse and with the information now coming forth about what has happened to our youth the past 10 years, I am hopeful that our legislators will be able to see what is happening to our youth, families, and community.  “Shut Them Down” is far from the answer we need – yet this is what The Arc and Self-Advocates in Leadership, People First and the Developmental Disabilities Council will be pushing for this upcoming legislative session.

Please listen to our families – you may not see or hear them – they are too busy trying to deal with the trauma in their lives.  We do have options that can be looked at – options and choices brought up by those who need or have used these supports and have found them to be extremely beneficial.  We may have to dig deep to find them and learn because they are purposely excluded from conversations and decisions by those who claim to be advocates and speak for “our families”

With that being said – as a person with current lived experience of this problem, I support Enhanced Behavior Support Home legislation currently being developed with WAA in addition to removing the discriminatory law passed in 2011 which prohibits those 21 and under from choosing one very viable option which is available in our state.

More to come on this critical issue.

I’ve been quiet this past year due to critical health issues and was going to shut this blog down since I did not have the time, energy or ability to even think about advocacy. But the fact that several people reached out to me in the past couple of months asking me for advice, seeking help for their own advocacy, or asking me to join them in other efforts, has prompted me to keep the blog up for historical references and information that may be difficult to find elsewhere. My hope is to continue to participate and we’ll see how it all transpires as time moves along.

Caseload Forecasting for Disabilities

Silhouette of people with sunset.

Senator Emily Randall (D- 26th Leg. District, WA) has introduced SB 6056 – Concerning the budgeting process for services for individuals with developmental disabilities

This is a hopeful beginning to the generation of appropriate funding for the needed supports to allow the people in this vulnerable population to be included in their communities as they would desire, improve their quality of life and help provide a more meaningful life as they would choose.

In our opinion, this means more choices and less restrictions, appropriate assessments of needs and supports and increased stability in all areas of life – home, work and community.

This bill will help address the issue of the mysterious people who live in the world of “the  no-paid services caseload” withing DDA.  No one knows who these people are, if they are even in our state or alive or what their support needs may be.  It will at least provide case managers for this population in hopes of being able to provide supports if these people are in need.

But, caseload forecasting is not just counting heads.  We need to understand what the range of support needs is and how many people are in each acuity level in each setting to better assess appropriate funding for these supports.

The Joint Legislative Executive Committee on Planning for Aging and Disability Issues (JLEC) had a work session on January 9, 2020.  A link to the session is highlighted.

 

JLEC – January 9, 2020   (Olympic Neighbors presentation begins at 48.00)

Olympic Neighbors, Father’s Group of Jefferson County, Developmental Disabilities Funding Crisis Task Force (DDFTF) members provided much information to the committee.  The chart below is taken from their information.

State Funding for Supports - Jefferson County Father's Group

Regarding residential supports – in theory the SOLA and Supported Living are essentially the same supports – the difference is that the SOLA is state operated and Supported Living is typically private-non-profit/profit agencies providing the support.

There is a significant difference in the wages for the caregivers in these residential settings – that of the state employee versus agency employees – but does that alone account for the difference in cost for these residential settings?

I think there may also be differences in acuity levels of the residents in these settings.  There may be higher percentage of higher acuity residents in the SOLAS which also could be reflected in the higher cost.

This is an issue that hopefully can be addressed in Caseload Forecasting.  We cannot base our funding on the “Average” for the whole population.  We must break out acuity levels and look at the average for that level.  This method will provide a much better understanding of the necessary funds for appropriate supports.

 

Cost of Deinstitutionalization

A quick review of the hospital data from the Washington State Hospital Association provided the information below.  Granted this is far from a thorough review of the information but it does provide some insight into the problem that has been addressed by the DD Ombudsman and the recent issue at Mason General Hospital regarding the “dumping” of people with IDD at the hospitals when community care providers are unable to provide the contracted care.

This data is only for numbers of people discharged (therefore does not include people in the Emergency Departments or people that were on “observation”).  It also does not state the reason for admission but does report the service provided.  For my review, I chose the service “Organic disturbances and Intellectual disability”

June 2017 – June 2018

total discharges 967
average cost per discharge $75,332
average number of days for each person 20.3
average cost per day $3,709

Total cost for the year for these 967 people who were discharged was

$72.8 Million Dollars

Wow – think how much better spent that money would be and how much better off these people would be if that money was used wisely for a full continuum of care – meaning the RHCs, local crisis stabilization, respite and supported living

This waste of money is what the “deinstitutionalization” craze has caused.  Since these costs are not paid for from the DSHS or DDA budget, they are not counted in the cost of care for those with IDD – If I am wrong about this, please let me know and show me the sources.

Illinois transparency laws could be a model for programs providing care to disabled in Massachusetts — COFAR blog

Things to think about to understand the needs and supports of our community members and how they are being met. It should not be a secret.

 

When it comes to the public’s right to know, Massachusetts state government has not been in the forefront in recent years, and issues concerning the developmentally disabled appear to be no exception. Not only are investigative reports on abuse and neglect of the developmentally disabled largely kept secret in this state, but those reports are primarily […]

via Illinois transparency laws could be a model for programs providing care to disabled in Massachusetts — COFAR blog

Critical Access Hospital used as “residence” – Abuse by DDA

This practice is finally being addressed.  Most recently, the case of using a bed in a Critical Access Hospital  as a “residence” for a man with a developmental disabilities. The man, a client of Washington State Developmental Disabilities Administration (DDA) developed some behavior issues.  A crisis evaluator responded and law enforcement transported the man to the local hospital for a medical evaluation.  The man was cleared medically to be released but the licensed home refused to take him back.

That means that without a safe and appropriate place to be released to, the hospital cannot release the man even though he is not in need of medical support services.

Read the Blog “Stuck in the Hospital – Mason’s Story”

My name is John Short and I am an Emergency Medicine Physician at Mason General Hospital in Shelton, Washington. The following is my first-hand account of an ongoing injustice perpetrated by the WA state government against a disabled person:

Since DSHS/DDA has failed to find housing for Mason, we are now in a position of providing it for him. These state agencies are well aware of the laws and are using them to force hospitals to become part of the housing “crisis plan”. Where does that leave hospitals such as ours that don’t have large facilities that can absorb the needs of such clients? “Housing” is not a reimbursable diagnosis and so it is very likely that MGH will receive no funds to cover Mason’s stay. Anyone who has received a hospital bill knows how much this means. This is not to mention the 24/7 security that has been hired by MGH which would not be covered even if there was a medical condition that we were treating.

I am fully aware of the views of Disability Rights Washington and Advocacy Agencies such as The Arc which push for deinstitutionalization – consolidation and closure of RHCs.  With policies such as those we end up with trans-institutionalization such as what is happening at Mason General Hospital in Shelton, WA.

This practice is abuse by DSHS/DDA – not only of Mason but of everyone in our state.  It is wasting time, money and resources while DSHS/DDA does nothing and forces others to do their job and a much higher cost – both money and human cost.

According to the reports, Mason had been in foster care and “aged out.”  It’s not as if the issues suddenly appeared – there should have been a transition plan in place and the new group home should have been well-staffed and knowledgeable on Mason’s care and support.  DDA clearly did not do their job before Mason ended up at the hospital.  He had only been at the new home 2 days before he was carted off by the Crisis Response and law enforcement to the hospital.

 

KOMO News report

How to create a crisis – deny services

Way back in 2011 and 2012 when Washington State was “researching” issues related to caring for our DD population, there was a DD Task Force which met several times.  The goal was to discuss the future of DD Care in our state with emphasis on the consolidation and closure of the close the Intermediate Care Centers.

Several of the predictions I had and tried to communicate to other DD Advocates and legislators have come to fruition.  Please listen to the families who are the real experts and survivors.  Advocacy Agencies such as The Arc, Disability Rights Washington and other similar agencies which receive public funds to provide advocacy must abide by their  policies – policies which may not be in the best interest of those actually involved.

  •  SL Start and client neglect/abuse – I reported issues in August 2012 to the legislature.  Senator Adam Kline only provided ridicule and sarcasm in his response to me –

“But I suspect this won’t happen.  I could be wrong, but I suspect that this story’s real value to the RHC advocates is in its expected political effect.  It portrays the RHC families—even the residents—as pawns in a game in which the malevolent community advocates are the operators.  SL Start is the villain in this instance, maybe the Arc the next time, maybe the Governor.  And you are “silenced” by these conspirators.  The victims are rendered mute, while only the conspirators may speak.  The conspirators “manipulate some of our community members.”   Oh, please!”

Obviously, this Senator believes this situation is fabricated to make an issue.  I wish it was but it’s not. This Senator goes on to berate me for being an advocate for safe and appropriate care and categorizes me into the “pro RHC” side.  When will he and others realize that it’s not about sides – it’s about safe and appropriate care for each individual.

April 2018 Headline – Apparently I had some real information that needed some attention.  If only people had taken the time to listen, trauma could have been alleviated.

Washington Shuts Down Care Provider For Disabled Adults, Now Families Face Tough Decisions

Below is an excerpt from the blog post dated September 8, 2012.  I address the issue that DDA did not even consider the issue of DD clients using the hospital and ER as crisis care.

That comes from a different budget so it’s not a factor to DDA.  Well it should be because it greatly affects the PEOPLE involved in addition to adding overall cost to our state’s budget.

While the concept of the crisis team is good, why not use the facilities and services we already have in place to run this program out of? We have the space and expertise to do this already and it seems ridiculous to start a whole new program for something that we have which already works very well.

I believe this was also part of Julianne’s testimony and she is 100% correct in her assessments of the situation.

As a parent who has survived crisis after crisis, I can also tell you that you should look to the hospital emergency room data on how many people are taken there for crisis. I believe you will find a lot more information regarding where folks with developmental disabilities go when they have a crisis. I also know this is the case from working with other families and hearing their stories. Talk to the ER nurses at Seattle Children’s and ask them how many families bring their kids with DD (particularly autism) there for crisis intervention. Talk to the Inpatient Psychiatric Unit doctors, nurses, and staff and Seattle Children’s. I believe you will find staggering numbers. You will see a much different picture than one you may hear from DDD. DDD is not aware of many of these crisis admissions to the hospitals because they are not notified.

What about connecting the crisis care team with the local hospitals and emergency medical response systems? What about connecting with the Crisis Line? I know that not only in our family’s case but in many, many others, these are the systems which we accessed in times of crisis. These are the places in which we will be able to realize the extent of the crisis situation with people with DD.

Please read the report the DD Ombuds   published and consider the tasks outlined to address this critical problem.

Provide appropriate funding to community residential providers and support the ICF to provide appropriate care for DD clients in crisis.

“Things I Mean to Know”

I was recently listening to the Podcast “This American Life” and was struck by the very question that I keep asking of advocates with regards to intellectual disabilities.   We are told over and over again that “evidence shows” yet have these advocates really looked at the evidence or are they just taking on faith what they have heard and have believed it?

Questions asked are “how do we know it’s true?”, “what is the proof of it?” “how much have you accepted without evidence?”

“Sometimes there’s a thing that you think you know, even though, right in front of you, staring you in the face, is clear evidence to the contrary.”  There are also the issues of denial  and deceit at play when censorship of opinions and experiences are practiced.

I’m keeping this here as a reminder to myself and others that things may not always be as they seem to be.  We cannot take things for granted and assume.  Just because someone says something and has an air of authority, it does not mean they are right, just, ethical or moral.

 

From AADMD – Virtual Grand Rounds

AADMD Presents:
We would like to extend a special invitation to attend our next Interprofessional Virtual Grand Rounds: Impact of a Medically Complex Patient Care Model on Cost and Utilization among Young Adults with Special Health Care Needs on October 2, 2018 8:00 PM EDT at:  https://register.gotowebinar.com/register/577645319591903491
 
Not only will you have the chance to participate live in these engaging sessions, but you will also be able to access these recordings in a Virtual Grand Rounds library on the AADMD YouTube channel for viewing whenever you would like. The videos can be found at: https://www.youtube.com/playlist?list=PLdZNR08Nu733MlVd5TiC-TQbeN0BeMuD1 
 
Please disseminate this information to anyone who you think would benefit.
 

This session will be led by Dr. Tomas Davis, a 2008 graduate from Drexel University College of Medicine in Philadelphia, PA. He completed his combined residency in med-peds at Geisinger in 2012. He served as med-peds co-chief during his fourth year. He is currently director of the comprehensive care clinic, designed to care for adolescents and young adults with complex medical illness that start in childhood and will follow them into adulthood. The clinic operates as a combination of both the medical home and complex care delivery models. He has received a grant from the Picker Institute, “Employing a Patient-Centered Approach to Develop a Medical Passport to Improve Transition and Educate Health Care Providers.” The information obtained from this grant has been presented at both national and international conferences and has been incorporated into the comprehensive care clinic. Dr. Davis is also active in the Health Care Transition Research Consortium leadership group looking at improving transitions of care nationally and internationally. He has worked on multiple projects on transitions and continues to look for new and exciting projects for residents to participate in. Most recently, he has received funding through GHP Quality Fund to be clinical lead for the Medically Complex Pediatric Patient Care Model redesign looking to combine both clinical enterprise and health information technology to improve care for the most medically complex pediatric patients. When not in the hospital he enjoys spending time with his daughter and wife, watching Philadelphia sport teams, cooking, and exploring the area.  

Presentation description:

Adolescents and young adults with special care and health needs in the United States–many of whom have Medicaid coverage–at the transition phase between pediatric and adult care often experience critical care gaps. To address this challenge, a new model referred to as Comprehensive Care Clinic (CCC) has been developed and implemented by Geisinger Health System since 2012. CCC comprises a care team, consisting of a generalist physician, pharmacist, and a nurse case manager, that develops and closely follows a coordinated care plan. This presentation examines the CCC impact on total cost of care and utilization by analyzing Geisinger Health Plan claims data obtained from 83 Medicaid patients enrolled in CCC.   The results indicate that CCC enrollment was associated with a 28% reduction in per-member-per-month total cost, driven by reductions in hospitalization and emergency department visits. This finding suggests a clinical redesign focused on adolescent and young adults with complex care needs can potentially reduce total cost and acute care utilization among such patients.  Also, he will discuss how this can be translated to other home institutes. 

 
Please register for Interprofessional Virtual Grand Rounds using the link above. After registering, you will receive a confirmation email containing information about joining the webinar.
Not sure what AADMD is or would like to learn more? Visit us at www.AADMD.org for more information and to become a member!

#choicefirst

Thank you to the Wisconsin delegation of Congressman Glenn Grothman and Congressman James Sensenbrenner for understanding the issues that are faced by many people with intellectual and developmental disabilities.

ccc_logo_houses

Thank you to those working with Coalition for Community Choice (#ChoiceFirst) who understand that our choices matter and we may not all choose the same thing.  We may even make different choices for different situations in our own lives.

Please spread #ChoiceFirst – it can save lives!

CCC Principles

Clarity!

 

I am making a proposal that Washington State should establish a “High Cost Review Committee” with representatives from Developmental Disabilities Administration,  Aging and Long Term Care Administration, Behavioral Health, and other representatives from various professional disciplines, community advocacy groups and families, that are critical to the care of this population.

Listening to the discussion that took place at the Joint Legislative Executive Committee on Aging and Disability (November 30, 2017) I was struck by the different approach to fiscal discussions for long term care settings compared to residential settings for people with intellectual and developmental disabilities.

I was impressed with the information shared.  The presenters were clear in the assessment of needs and costs and that those individuals with higher support needs have a higher cost of care.  They take this information into account when making decisions for aging clients and also those with dementia.  The presentation for Adult Family Homes indicated there are 17 different acuity levels for residents with correpsonding reimbursement rates.

One Senator asked for Clarity – clear ideas of the finances needed to try to meet the service need.  Without a clear idea of the cost they are unable to understand what is needed.

I question why this approach is not used when making fiscal decisions for residential care within the Developmental Disabilities Administration.  The data regarding acuity of care and costs is available to use but is not shared with those making budget decisions.  Without an understanding of the number of residents in each level of acuity (Levels 1-6), the legislators are not able to make an informed decision.

Last year I was accused by one state Senator  (Senator K.) of fabricating costs attributed to my son who lives in supported living when I shared those costs with another Senator (Senator C.).  All I did was forward the DDA documents I receive to Senator C- if there was fabrication it was not on my part.  Senator K stated that the data was irrelevant to the situation (cost of care of high support resident – seems very relevant to me)

Senator K wrote:  “Unfortunately the numbers you are using are misleading and imply that community care services are more expensive than RHC care.  Since the state pays for both, we have significant experience in many different clients and settings, the various elements of costs.  We have used averages for our proposals because that is the most accurate way to account for a group of clients and settings.  On average, community care is much less costly than RHC care.”

Using the AVERAGE cost of care is one reason that there is a crisis.  It obviosly does not work to use this average for the budget purpose of the cost of care for residents with high support needs.  Doing so will cause extreme underfunding of appropriate and mandated services.  Doing so is neglect.  My response to Senator K is linked here.

New Hampshire understands this fact about cost of care.  They realized that in order to provide effective community based services to all individuals with IDD- including those with significant medical, behavioral and psychiatric needs, they needed a collective of responsible parties – policy makers, agea agencies, service providers, families and communities to play a role.  The NH High cost Review Committee was formed in efforts to sustain and improve services for New Hampshire’s most vulnerable citizens.  This report from the High Cost Review Committee has critical information on providing appropriate and cost-effective services for this population.

The Human Services Research Institute (HSRI) compiled information regarding the percent of the waiver budget for states was used by the 5% most expensive residents.  This report was done in 2009 and they had hoped to update.  I inquired into an updated version and unfortunately one has not been produced.

In addition to asking for an updated report of the 5% most expensive service users, I shared my concern about using “average” cost of care with the polcy analyst.

” My concerns are that the “average” cost of all people with IDD is used when looking at what it would cost to move people out of the ICF into a community home. Typically, the people in the ICF are those with higher support needs (hence higher cost) in the community and if one uses the average cost for community they will greatly underestimate the actual cost and the funding will not be available to safely care for the population. ”

This is the reply that I received from the HSRI Policy Analyst –

Your concern about the average cost of serving people is a valid one, as an average often masks outliers that can be important to consider.

 

HSRI 5 percent

 

 

Senator K and others in the legislature who believe the “average” cost of care is the number to use when trying to clarify budget needs – please ask for more accurate data from DSHS and DDA regarding at least the average cost of care for each assessed level of service.  That information would be much more useful in forcasting cost and services than the overall average.