Supported Living Crisis

It is absolutely necessary that we provide funding to support our direct care providers in the community settings.  We have been in a crisis situation and it is only getting worse.  It is time to step up and provide the support that we all say is needed but do not provide the funding to back the words up.

Please read the position paper Underfunding of Community Residential Services by the Community Residential Services Association.  While I do not have all the cost reports of the community service providers nor the cost reports of the state funded services to compare the cost of care, I do know that the cost of direct care for those with high support needs is about equal across the board.

It is the costs of all the other services that add up and can make one type of residential setting appear more costly than another.  It also depends on what is included in the cost reports.  I believe there is cost shifting and capital costs which may not be reflected but, again, I do not know for sure since the data is extremely difficult to sift through.  It is something to take into consideration.

Regardless of the cost issue there are other major concerns that need to be factored in. Personal Choice of residential setting, access to quality health care, continued learning opportunities, employment and meaningful life activities all need to be included in the big equation.

There is not one type of residential setting that guarantees that all these aspects of life will be met or even considered but I do believe that living close to family, friends and natural supports does increase the chance that the person will have a meaningful life that is fully integrated into community.

 

 

 

Autistic Man walks away from drunk caretaker

This story exemplifies some of my worst fears.

Answers sought after autistic man walks away from drunk caretaker.

I hate to take advantage of situations which have caused harm to others but in this case, I must point out that this is the very issue which I am trying to advocate against.  I have been trying to have the so-called DD Advocates (The Arc, Disability Rights Washington, the Washington State Developmental Disabilities Council, the Community Residential Service Associates and others) look at the facts more accurately.  They refuse.  Maybe more stories such as this will help open their eyes to what they are really advocating for with regards to our most vulnerable citizens with the highest support needs.  They are not advocating for safe, quality, cost effective care but for substandard and negligent care.  Rather than advocating for the vendors, it is time they really advocated for our citizens in need.

Here is my post to the KOMO News story:

As a healthcare provider, parent of a child with intense support needs and advocate for our most vulnerable citizens, this story more than sickens me. I am appalled at the care, lack of oversight and more that is reported in this story and am so thankful that this man was found and will hopefully now be cared for in a caring, safe, healthy and humane environment for him.

I’m so afraid that we will hear more and more about abuses such as this one. The Arc, Disability Rights Washington and even the Washington State Developmental Disabilities Council all oppose any type of congregate care for our most vulnerable citizens – stating that all citizens can be safely cared for in community settings for less cost. The only way to have it cost less than a congregate care community is to endorse negligent care such as this type of care.

With staffing turnover rates of up to 45% in these community settings, there is no stability or sustainability and I wonder about the level of training and lack of back up support for the staff and residents. To me, this situation is a time bomb ready to go off at any moment.

This is so unfortunate since the so-called DD advocates will not address the facts about support care levels and safe care. They support the vendors, such as Service Alternatives rather than our loved ones.

I support a continuum of care model – a model which is based on the assessed needs and choices of the person and their family/guardian. This model includes the Residential Habilitation Center (Fircrest, Yakima Valley School, Rainier School and Lakeland Village) through independent homes. It is the safest and most cost effective model to best serve ALL our citizens with intellectual disabilities.

Much of the factual information has been shared with these so-called DD advocates and legislators – but they do not want to address the facts. I do hope that publicizing these tragedies will serve some good in knocking some sense into those who make the policies. Much of the research regarding the facts of the issues can be found at www.becausewecare1.com.

It is our duty as a society to safely care for our most vulnerable. Yes, this is a hard job, I know, I’ve been there and I am SO thankful for the care that our son is finally able to have at Fircrest. He loves his home there, he loves his school (Shorecrest) and he is active in his community. Yes, it’s not perfect but it’s the best we can do and it is the safest and least restrictive environment for him and many others.

I do know there are some excellent community homes with excellent caregivers.  We need to support our caregivers – they are the backbone which provide stability and sustainability.

Do you know what you advocate for?

As a parent who has survived a revolving door of crisis after crisis and of a child who was given a second chance at life by being allowed his right to admission into a Residential Habilitation Center, I write this letter with hopes and dreams but also with sadness.  If one person’s life is saved by this, it’s worth it and I do know that I become a broken record – but it is necessary to be heard.

When our child lived at home we had no other life but trying to keep him safe and healthy.  I was not able to attend any meetings or participate in  advocacy beyond trying to work with DDD to approve the “allowed” services and support on the waiver he was on.  After several years of fighting just to get him prescribed supplies (DDD denied them as ‘unnecessary”) I turned to The Arc.  The Arc was no support at all – I was told to call my legislator.  Well, as a parent in crisis, that recommendation seemed ridiculous (now I know different) but I think that someone from The Arc could have helped me – they had no interest in helping me or our son.

Up until then, I had assumed that The Arc and the other DD advocates really did have the best interest of those with Intellectual Disabilities (ID) in mind.  I now know differently.  I see the false advocacy and hidden agendas and mud slinging that is done in addition to the personal assaults and censorship that allowed.  This letter will name specific people  – a practice that I have realized that I need to do in order for them to have some accountability to our community.

Why aren’t these advocates held accountable to being responsible stewards of our public resources?  They are failing us.  It’s time that these folks answered questions and responded to inquiries, rather then writing personal attacks to and about the person who asks the questions.  I would gladly discuss the issues with them or answer their questions about the research I have done or the data I have collected – they are not interested in even looking at though.

Mark Stroh – Executive Director of Disability Right Washington 

Sylvia Fuerstenburg – Executive Director, The Arc of King County

Senator Adam Kline

Developmental Disabilities Council

Please ask these people to:

1.  Read the US DD Act

2.  Read the 1999 US Supreme Court Decision Olmstead

3.  Review the data regarding cost of care for people with high care support needs. (https://becausewecare1.com/2012/06/11/will-negligence-become-the-new-standard-of-care/)

4.  Defend the research in the Report entitled “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” – also, if you know anyone who does any research, have them take a look at this and see if they can defend the author’s findings.  Let me know what you find out.

5. Ask them if they understand the significance of the Support Intensity Scale and the DD Assessment which looks at activities of daily living. (https://becausewecare1.com/2012/06/09/to-the-arc-and-other-community-advocates-for-people-with-intellectual-disabilities/)

6.  Have them review the non profits and financial statements which work with ID clients in our state

7.  Have them look at the issues of, lack of stability and sustainability of our caregivers, which directly affects the health and safety of our loved ones. (https://becausewecare1.com/2012/06/14/how-can-we-have-stability-and-sustainability-with-up-to-45-staffing-turnover/)

I’m not interested in hearing the same rhetoric from The Arc Advocates and their constituents – that information is inaccurate and misleading.  I’m interested in speaking with those who actually would like to know what the data means, where it came from and what it represents.  Those in The Arc do not know this information.  DRW does not know this information. Community Residential Service Association does not know this information.

 It has been shared with all of these organizations but they will not acknowledge the information because it does not support their agenda.

I can say that I have appreciated conversations which I have had with Sue Elliott, Executive Director of The Arc of Washington.  She has been candid and has indicated that yes, I am correct in stating that for those with high support needs the cost of care would be more expensive in community settings.  The Arc, though, believes that no one should live in any congregate care and that is what they advocate for.  It is fine to advocate for no congregate care but in so doing one also has to use accurate data and say that they do not agree with congregate care but it will cost more.  They are not doing that – they are giving false information to support their advocacy.  This is very detrimental to ALL with ID.

Please, I welcome questions and concerns.  I would appreciate feedback and will get back to you.  I have researched much of this data and have the public records and citations of all resources.

Please share with those who may need to know or understand this information or have them contact me.  I would be very happy help anyone understand the complexities of caring for a person with ID who has very high support needs.

To The Arc and other Community Advocates for people with Intellectual Disabilities

I am going to be presenting some very critical information.  I do not have a bias for community versus institutional settings for residents as many of you believe I do.  My bias is in the truth and reporting accurately what the reality of the situation is.  My bias is in upholding the US DD Act and upholding the 1999 US Supreme Court Decision of Olmstead.  I believe health and safety are paramount in the individual and their family/guardian’s choice in making the individual choice of what is best for that person.

Please read through the material, re-read Olmstead (or read it for the first time) and the US DD Act and then respond.  I will gladly answer all questions and I have documented all sources.  I welcome comments from people who have read the information or from those who would like more information.   Thank you.

This is why our community resources and our state run institutions are in such crisis – it’s because people are misguided and are using inaccurate and false information to base policies on.   In order for us to turn this crisis around, we need to start seeing things in a more realistic light.

The following quotes are taken from a “research” report authored by DSHS employees.  Read the quotes and then formulate an idea about the care levels for the residents in the 3 environments which were studied.  Then look at the authors’ conclusions and “Key Findings” and see if you agree with their assessments.

“Clients in RHCs had significantly higher support needs indicated for all SIS scales than clients in community residential programs and those supported in other community-based settings.”

“Clients in RHCs had significantly higher Behavioral Support and Medical Support need scores than clients in community residential programs and those receiving other community-based services.”

“Based on the interquartile ranges (25th-75th percentile, where half of each group’s scores lie), represented as a rectangle on each line in the chart below, and the medians (the midpoint of the distribution of scores, represented by the diamond shape inside each rectangle), support needs for RHC clients are typically higher on all scales, and clients residing in community-based settings have more diverse support needs for home living, health and safety, and social activity than clients in RHCs or community residential settings.”

“Clients in RHCs were more likely than those in community residential programs or clients receiving other community-based services to have high scores on all the DDD acuity scales presented below, except for seizure acuity. An extremely large percentage of clients living in RHCs have high acuity levels (and therefore elevated or urgent need) for protective supervision (95.3 percent) and interpersonal support (86.3 percent), and almost three fourths have high acuity levels for activities of daily living (73.6 percent).”

“Clients in RHCs were more likely than those in community residential or other community-based programs to have high acuity levels noted for behavior problems. Over one third have high behavioral acuity scores (40.6 percent). High behavioral acuity scores indicate that the most prominent problem behaviors for these clients are potentially dangerous or life threatening. Clients in RHCs were also more likely to have high medical and mobility acuity than those in the other two residence types, with over one third in RHCs having high medical acuity and one fourth of those in RHCs having high mobility acuity.”

“Clients residing in RHCs had significantly higher support needs than clients in community residential programs who, in turn, had higher needs than those residing in other community-based settings for activities in the following life areas: Home Living, Community Living, Lifelong Learning, Health and Safety, and Social Activities.”

“The more restrictive the setting, the greater the likelihood of having high medical support needs.”

“Our current findings suggest very clear differences in medical support needs, with those in RHCs being more likely to have high medical support needs than those in community residential programs, and those in community residential programs being more likely to have high medical support needs than those in other community-based settings. Specifically, clients served in RHC’s were more likely to have an exceptional medical support need than those in either of the community settings, and clients in community residential settings were more likely to have one than those in other community-based settings.”

“With updated data for long-term RHC residents, there is now a clear difference; with those in RHCs more likely to have a medical support needs score greater than five than those in community residential or other community-based settings.”

The quotes above are all taken from “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” by Barbara A. Lucenko, PhD and Lijian He, PhD.

“The purpose of this report is to examine the similarity of support needs among DDD clients living in the following three settings: 1) Residential Habilitation Centers (long-term residents of RHCs with recent full assessments of need), 2) community residential, and 3) DDD clients supported in other community-based settings.” (Lucenko, 2011) yet in the Key Findings the authors  DO NOT address the 3 areas but have arbitrarily combined the RHC and Community Residential into one group and Other Community into the second group.  By doing so, they have invalidated all the work of the study and have not addressed the purpose of the report.

This misleading report is what legislators were given to base their decisions on.  I urge anyone with any academic or research based background to look at this report and testify as to the validity of the authors conclusions.  This type of academic or research reporting would be thrown out of any “real” academic study so why does our legislature allow such shoddy work to guide policy?

Of the 7 areas assessed by DDD for Support needs (acuity), the average RHC resident scores HIGH in 3.61 of the areas, Community Residential in 2.05 and Other Community in 1.61.  This clearly indicates that the average RHC resident requires more support than the average Community Resident.

Residents with mutliple areas of HIGH Needs

Support HB 2150

Please support HB 2150

This bill is geared at raising revenue which will be put into a fund to provide for  vendor rates and oversight of community residential service businesses.

Our community residential services for people with an intellectual disability are crumbling.  The devastating cuts have already reduced the low wages of the direct support professionals  (DSP)who provide the daily care to some of our most vulnerable citizens.  We rely on these DSPs to safely care for our loved ones and we need to support them in their jobs.

There is currently at least a 40% turnover rate among DSP – most likely due to the low wages and incredibly challenging work. About one third of these employees work a second job (as reported on TVW January 11, 2012 Public Hearing at House Ways and Means Committee) or work overtime due to staffing needs.   This staffing turnover leads to greater instability in the workforce.  Without a properly trained and rested staff, our family members suffer.  This then leads to injuries – both to staff and residents.

King County DSPs make about 61 cents more an hour than DSPs in neighboring counties.  This disparity causes a problem in the neighboring counties since staff will travel to King County to work and if needed to work overtime will generally opt to take the overtime in King County and call in “sick” to work in neighboring counties.  This causes undue stress to residents and also a higher turnover rate in counties which neighbor King County.

Cost of care as reported by each agency and DSHS payments to each agency based upon support needs of residents

Please encourage your legislators to vote for HB2150 – this will help our state in living up to our Washington State Constitution – Article 13 as shown below.

Washington State Constitution

Article 13

 

 

ARTICLE XIII
STATE INSTITUTIONS

SECTION 1 EDUCATIONAL, REFORMATORY, AND PENAL INSTITUTIONS. Educational, reformatory, and penal institutions; those for the benefit of youth who are blind or deaf or otherwise disabled; for persons who are mentally ill or developmentally disabled; and such other institutions as the public good may require, shall be fostered and supported by the state, subject to such regulations as may be provided by law. The regents, trustees, or commissioners of all such institutions existing at the time of the adoption of this Constitution, and of such as shall thereafter be established by law, shall be appointed by the governor, by and with the advice and consent of the senate; and upon all nominations made by the governor, the question shall be taken by ayes and noes, and entered upon the journal. [AMENDMENT 83, 1988 House Joint Resolution No. 4231, p 1553. Approved November 8, 1988.]

Original text — Art. 13 Section 1 EDUCATIONAL, REFORMATORY AND PENAL INSTITUTIONS — Educational, reformatory and penal institutions; those for the benefit of blind, deaf, dumb, or otherwise defective youth; for the insane or idiotic; and such other institutions as the public good may require, shall be fostered and supported by the state, subject to such regulations as may be provided by law. The regents, trustees, or commissioners of all such institutions existing at the time of the adoption of this Constitution, and of such as shall thereafter be established by law, shall be appointed by the governor, by and with the advice and consent of the senate; and upon all nominations made by the governor, the question shall be taken by ayes and noes, and entered upon the journal. (Washington State Constitution)

http://www.leg.wa.gov/LAWSANDAGENCYRULES/Pages/constitution.aspx

The Almighty Dollar more important than peoples’ lives?

Below are excerpts from letters that I have received by those who make profits from residential services.  I understand the attacks against me since he views the accurate data being presented from original sources as a threat to his livelihood. 

What I would really like him to consider is the threat to the lives of those less able them him who will have all funding and resources cut if this data is not looked at accurately.  He is refusing to do that but instead throws arrows at me by saying the data is  manipulated.  The data is presented exactly how DDD records it in their records, how the agencies themselves report it to DDD and how the agencies themselves report to the IRS – hardly manipulated on my end. 

This CEO has clearly not read the reports nor is he aware that most of my research is geared toward improving the quality and safety of  care to those who do not reside in the RHC and to also bolster services and resources to people in the community at large.  His fear and anxiety about true data being exposed is clearly evident in his attacks.  It’s interesting that he does not counter-present with facts that would indicate what I have is incorrect  – I assume that is because those “facts” are non-existent. 

“I will not be communicating with you in the future as it is obvious that you are unable and/or unwilling to support community services, which is evidenced by your focus on presenting deliberately misleading data to state personnel and legislators.

Your lack of knowledge and understanding of services and funding is glaringly apparent in one report that you posted in which you claim that the “Cost correct for Resident Acuity” is over $850 per person for the Arc of King County, while you list the RHC costs at or below $200.  I fully understand that you are the parent of a person that resides within an RHC, and that you believe you are advocating for all people who experience an intellectual or developmental disability to have access to a continuum of care.  However, your approach plays as one-sided, is immensely inaccurate, slants towards de-valuing community residential services, and does notsupport a continuum of care.

Your continued efforts on a daily basis to distort the truth and inflate the data to present community services as more expensive sends the erroneous and destructive message to decision-makers that services can be further cut.  You are playing a dangerous role in your efforts and as such, I ask if you are even aware that your efforts will lead to further erosion of community services for people with developmental disabilities and will have grave and serious impacts upon those individuals who currently live independently in the community with community residential supports?

With regard to the data you present, I wanted to make some corrections.  It is important to correct these inaccurate figures since one of the reasons that we continue to face cuts is because individuals and organizations present data that has been either incorrectly calculated or misrepresented to somehow convey that community programs are more expensive, therefore being overfunded.  By presenting reports that state community programs are expensive, it sends the message to legislators that we should be cut.  This is part of the reason why we are in this crisis. 

Alpha Supported Living Services’ costs, on average, are above the average because 1) we are located in King County, which has the highest cost of living and therefore highest benchmark funding, and 2) we serve some more challenging individuals so our costs are higher than the average acuity level.  For example, over 40% of the individuals supported by our agency formerly lived in an RHC, 33% have a diagnosis of Autism, and approximately 40% have an accompanying mental health diagnosis.  As such, our costs are higher than the average due to acuity levels. “

This last point regarding costs are higher for higher acuity is one example that I have been trying to communicate – it is good to see that he recognizes that fact here but when speaking to legislators and the public, that would not be addressed.  As an example the attached graph indicates the cost of care as reported by each agency with respect to their reported “Average Hours per Day for Resident Care” – a measure that indirectly looks at client acuity.

Cost of Care chart with hours per day as reported by each Supported Living Agency

It is interesting to be aware that the average cost of care reported by DDD is $6400.00 a month.  This average cost is equal to about 11 hours per day.  On this chart, the highest reporting agency had 21.65 hours at $10,816 per month and the highest cost agency reported 18.22 hours per day at $15,620 per day. 

Another VERY critical issue is that these reported costs DO NOT include medical, dental, nursing, psychiatry, prescription medication, therapies, education, vocational training, habilitation, FOOD and RENT. 

My message as an advocate for a continuum of care is that these residents with high support needs are EXPENSIVE to care for no matter where they live.  It is more cost effective, safe and less restrictive for many of them to live in the RHC.  These are the FACTS – no manipulation, no inflation, only the facts. 

This is the information which needs to be shared and understood – when people try to cut corners and under-report, people die.  We have seen this happen already this past year. 

The Stand Opinion

Community Residential Services Association – Please Respond

In Attempts to better serve ALL our residents I have been on a mission to uncover some of the real information that we all need in order to make informed decisions.  This information will be questioned and I welcome that – it is the only way to get to the bottom of the problem.  This have been covered up for too long.

I have tried to communicate and ask questions with those in the residential care industry but they do not respond, nor do the administrators in the Division of Developmental Disabilities.  Below is part of my  latest letter to Scott Livengood, CEO of Alpha Supported Living and the Legislative Chairperson of Community Residential Services Association.  I do hope that he does respond to this illuminating data – not only to the questions about cost of care but about his own salary and the numerous vehicles which Alpha Supported Living utilizes.

I have gathered much information from the Certified Residential Care Cost Reports, IRS 990 Tax Returns, DD EMIS data regarding waiver costs and other DSHS costs for DD clients and also have reviewed many Residential Care Services  (RCS) Enforcement letters, mortality rates for various populations and the Certification Evaluation Reports for many of the supported living programs. 

From the above data I have made a chart which will be publicly distributed.  It clearly shows the cost of care by acuity, the profits that many of the agencies make (and also the losses) and people will be able to see that the reported average (by DDD) cost of care is much less than the actual cost – this is one area which continues to be misrepresented and causes much of the problem. It is important to note that very few of these agencies report the higher acuity that is found in the RHC but they routinely state they are the same.  By their own self-reporting, many are not even close to the  same acuity.  It must also be remembered that the majority of these costs do not include medical, dental, nursing, prescription drugs, therapies, food and rent.

  In reality, the cost of care is much higher than even this chart indicates.

I do have some specific questions for Alpha Supported Living though: 

  Your salary. Scott, is way out of line with the other salaries of other Executives – even though the 990 states the salary is comparable to the industry and regional standards. 

What region and what industry does it compare to?

Also, why does Alpha Supported Living have 30 vehicles? 

The agency sold 17 vehicles in exchange for leasing vehicles.  Who utilizes all these vehicles?

All Data from the chart in the link was secured through public disclosure or is public record.

cost of care as reported by each agency, DSHS payments, Profit and Loss

IRS 990 forms for Supported LIving, High Earner compensation, profits/losses

Supported Living Agencies, Residents and Automobiles