Too Little, Too Late

In continuing to  address the issues of reported healthcare neglect  in the intermediate care facility for those with intellectual disabilities and how investigations are handled within the Department of Social and Health Services, I have had very similar observations of a flawed system that is reported by experts in the report Too Little Too Late:  A Call to End Tolerance of Abuse and Neglect.

too-little-too-late-title

The above report does not address complaints and investigations of allegations from those living in the institutions but the observations reported by the expert consultants are concerns that I have expressed regarding lack of accountability in the system which is supposedly there to protect our most vulnerable.  I realize it is not my imagination but reality that the system is broken.

“My review of the Washington DSHS Quality Assurance system, specifically mortality review, found a flawed system that does not “meet and maintain high quality standards” and is not an effective safeguard to protect health and welfare. Within the 6 months studied-June 1- December 31, 2012- there was a number of preventable waiver participant deaths. In addition to the concerns I have about these avoidable deaths, the poor quality of care for other participants, whose death although expected, causes me great concern about the quality of health care coordination and provider ability to meet the health and welfare needs of Washington waiver participants.”

Sue A. Gant, Ph.D. Date:  August 6, 2012

 

“Another unusual feature of the RCS investigation summaries is that they often did not reference findings pertinent to the allegations of abuse, neglect, mistreatment, and exploitation referenced in the initial complaint(s). In other cases, investigation summaries would reference these allegations and findings regarding their merit, but then conclude that the no provider practice deficiency was identified.”

“Many of the problems could be traced back to the tardiness of the investigations, but others (as also noted in my initial report) reflected the investigators’ failure to address significant issues, including allegations of abuse and neglect. In addition, as noted in my initial report, these investigations continued to manifest a trend of very “conservative” determinations of no citations for “failed provider practice,” even in instances when investigation documents explicitly referenced failed practices.

In addition, DSHS’ routine “planned ignoring” of allegations of employee abuse and neglect in its investigations is wholly non-compliant with basic expectations of the Centers for Medicare and Medicaid, as well as its own Quality Management Strategy”

Nancy K. Ray, Ed.D. President NKR & Associates, Inc

As a nurse who has worked in a Joint Commission Accredited Healthcare Institution  for over 30 years, I understand the purpose of nursing policies and protocols.  They are not just a useless exercise – they are there for a reason – TO ENSURE PATIENT SAFETY – and they accomplish this through various routes.

he prerequisite training credentials of their investigators, are not addressed at all by DSHS’ policies. Other procedures prescribed by the policies are routinely not complied with, either because resources to ensure their implementation are not available or supervisory oversight by DSHS is so lax that noncompliance by investigators and their supervisors has become commonplace.

When an investigation is returned “Allegations unfounded” together with the nursing policy that was clearly violated in many areas, questions of integrity, accountability, knowledge of the subject matter, and many other questions arise.  There is certainly not “closure” to the problem as the agency sweeps it under the carpet with the rest of the ignored problems they wish away.

Resident health and safety is at risk and will continue to be so until some of these problems are addressed and a plan of correction put in place and evaluated for success.

Abuse and Neglect Response Improvement Report – October 2013

subcommittee-response

 

There is a solution to the problems that I am referring to.  Ensure The Department of Health has oversight and licenses the healthcare clinics housed on the campuses of the residential habilitation centers.  DOH is the state agency which specializes in healthcare and should be the agency which provides oversight of healthcare – not the Department of Social and Health Services.

 

DD Ombudsman

Hopefully soon, Washington State will have a Developmental Disabilities Ombudsman.

This past year legislation was passed (thank you  Senator O’Ban,  the legislative champion for SB 6564, providing protections for the most vulnerable people from abuse and neglect) which will provide funds to develop The Office of Developmental Disabilities Ombudsman.

dd-ombudsman

There has been a great need for this type of oversight for all people with developmental disabilities but especially for those who live in an intermediate care facility (ICF).  While the Long-Term Care Ombudsman can help in situations for those who live in a skilled nursing facility, group home, assisted living or other long-term care facility, the Long-Term Care Ombudsman is not available to assist the residents in the ICF.

These residents have been without an adjudicator if concerns regarding their care  or other issue are not addressed appropriately.  This is especially true for those residents in a state operated ICF.  Without an independent authority to help mediate differences between the person and the state, these residents may not have had an objective investigation of their concerns.

Allegations of neglect and harm have been ignored or swept under the carpet by the state agency when conducting investigations of state facilities.  The DD Ombudsman will help prevent some of this injustice to our most vulnerable citizens.

I contacted the Department of Commerce last week to inquire into the development of the Office of the DD Ombudsman given that the bill was passed last legislative session.

Below is the response that I received from a spokesperson for the Disability Workgroup:

“A stakeholder meeting was held September 29th and written comments were accepted through October 15th.

I am currently drafting the solicitation to be released later in November. Evaluations of the bid responses will be in January 2017 and an announcement of the winning proposal probably in February 2017.

That organization will need to create the office, hire staff, train volunteers, etc. I anticipate them starting their ombuds duties sometime in the summer of 2017.

I hope this helps. Thanks for asking.”

I (and others) have been misled

For several years I was under the impression that the Intermediate Care Facility (ICF/ID) and Residential Habilitation Center (RHC) where my son lived was also a healthcare facility.  We were led to believe that the medical and nursing providers had oversight by the Department of Health which also provided oversight to what was referred to as “the healthcare clinic.”

The ICF/ID and RHCs are NOT healthcare facilities.  There is no professional peer review or oversight by the Department of Health.  I have learned this lesson after years of frustration trying to get appropriate medical and nursing care for my son who was a resident of the RHC.

While these facilities in Washington State employ Physicians, Nurses, Physical, Occupational and Speech Therapists to provide care to the residents, there is no state oversight of this care to ensure it meets the community standard of care that everyone should be entitled to.  The residents and their families/guardians are led to believe that appropriate medical and nursing care is provided but in some cases, I believe this is not happening.

This is a systems problem that no one seems to be able to address.  The Department of Health has no oversight, the Department of Social and Health Services does not look at healthcare standards, the Long Term Care Ombudsman does not oversee anything having to to with the Intermediate Care Facility or RHC, Disability Rights Washington (the Protection and Advocacy Agency) has not addressed this problem.

I fully support the idea of an intermediate care facility and a campus community that can provide full service health and behavioral care but the system in place in our state does not meet this standard.  It is shameful that the agency which oversees the RHC cannot see that there are major problems ensuring the healthcare for the residents is provided for.

It appears to me that our state is not meeting the Federal Regulations  and the so-called “investigations” that have been done have been a waste of time and energy.    This is so frustrating  – when they can not even see the problem, there is no opportunity to fix it.  The whole system is in denial and it is only hurting the very people who are supposed to be helped.

The investigator I spoke with today made it very clear by her repeated statement of “the RHC is not a healthcare facility” and by the regulations she had there were no deficiencies to cite.

I read the Code of Federal Regulations differently though – Below is the exact text from the Code of Federal Regulations  – am I reading this incorrectly?

  • 440.150   Intermediate care facility (ICF/IID) services.

(a) “ICF/IID services” means those items and services furnished in an intermediate care facility for Individuals with Intellectual Disabilities if the following conditions are met:

(1) The facility fully meets the requirements for a State license to provide services that are above the level of room and board;

(2) The primary purpose of the ICF/IID is to furnish health or rehabilitative services to persons with Intellectual Disability or persons with related conditions;

(3) The ICF/IID meets the standards specified in subpart I of part 483 of this chapter.

(4) The beneficiary with Intellectual Disability for whom payment is requested is receiving active treatment, as specified in §483.440 of this chapter.

(5) The ICF/IID has been certified to meet the requirements of subpart C of part 442 of this chapter, as evidenced by a valid agreement between the Medicaid agency and the facility for furnishing ICF/IID services and making payments for these services under the plan

So, my questions are is our state our of compliance by the ICF/ID or RHC not being a healthcare facility?

If so, how is this remedied?

 

 

 

The Last of the Institutions – corrections to investigation

Update January 7, 2016 regarding inaccurate data used in the DD Audit by Washington State Auditor – see red notes below

Corrections and clarifications are needed by Susannah Frame from King 5 News regarding her “investigative” series “The Last of the Institutions.

Ms. Frame and Russ Walker, Executive Producer King 5 Investigators, have both been notified of these issues and have been given more accurate and objective data and research.  Our hope is that they review the information and research they have been provided and produce a more accurate portrayal of the very complex issues involved with the care of our citizens with intellectual and developmental disabilities.

  1. DDA Case Load and Costs Oct 2015 with Explanation – the reporters failed to mention that the costs attributed to the RHCs actually include costs for an average of 65 “community” clients who utilize the RHCs for short term stays, respite care, crisis care and other services.  This link has the explanations as provided by the Communications and Performance Unit Manager at DDA.
  2. These 65 clients are a non-duplicated number each month so in reality there could be 780 community clients who have their care and services billed to the RHC.  When looking at it this way it is clear that the RHC serves those in the community just as much as it serves the permanent residents.
  3. The DD Performance Audit is riddled with inaccurate data and has failed to capture much of the critical information needed to run a real performance audit.  Information about some of the issues can be found on this website under DD Audit.
  4. The DD Audit also uses resources that non-existent.  For instance, the DD Audit states they used the National Core Indicators Consumer Survey for Washington State 2009 -2010.  Washington State did not participate in the Consumer Survey by the National Core Indicators for the years 2009-2010.   Still trying to locate the data and the report the DD Audit team used for their information.
  5. In addition to questionable resources being used, the National Core Indicators are biased in their ability to capture the voice of those with more profound levels IDD and/or pronounced communication impairments. This population is excluded from the survey
  6. The NCI data is not a “national average” as reported by the DD Audit report.  The survey is only an average of the 16 states that voluntarily use the survey.

 

Response from the Human Services Research Institute in answer to my questions about our State Auditor DD Performance Audit which incorrectly referenced the NCI data for their audit.

In the past, WA collected the Adult Consumer Survey data during a time period that crossed over two separate NCI collection years – between Jan 2007 and Dec 2008.  (see below email from Lisa Weber, PhD) 

Because of this, the data could not be included in the national averages for the year 2009-10.  WA was issued a separate state report on these data (see attached.).

However, these data were included in the chart generator for the 09-10, but are NOT included in the NCI average on the chart generator for that year.  When you look at the data on the chart generator from 09-10 for Washington, please keep in mind the circumstances described above (especially if when comparing to the NCI average.)

Your question brought to my attention that this information should be noted in the chart generator for WA for that year.  I will work on getting that info added.

Referenced email from Lisa Weber, PhD (Washington State):

The attached file contains our data from the NCI Consumer Interviews.  There were 545 adults who participated in a Consumer Interview.  The interview responses and feedback forms are store in separate Access databases.

We have a two year data collection cycle, so this data was gathered between Jan 2007 -Dec 2008.  It was all gathered using the old version of the interview form.  We modified the data entry forms a bit to cover our additional questions and to make the data entry easier for our quality assurance staff, but the numbering of the NCI items in the tables has been left intact. 

Please write to Susannah Frame at sframe@king5.com and rwalker@king5.com to express concerns regarding the lack of objective reporting in this investigative series.

Why the confusion, King 5?

We often hear varying opinions about what the cost of care for people with intellectual disabilities really is.  This  should not be so difficult to figure out given that there are resources upon resources to use.  For some reason though, several of the resources which could give us the best information are not used.  This makes no sense to me unless the goal is to keep the public and legislators confused and to keep pretending that there is no real way to make a comparison of cost for community and institutional care.

In the most recent airing of “Last of the Institutions” by investigative reporter Susannah Frame of King 5 News, she did refer to the cost of care for one young man with high support needs.  He lives in a home supported by Alpha Supported Living.  Ms. Frame also interviewed Scott Livengood, CEO of Alpha Supported Living and referenced the “average” cost of care for those in dispersed community housing.  This young man’s daily care cost is $370.00 – far higher than the “average” cost reported to legislators and the public.

Using this “average” cost is a tactic that is used to hide the truth of the issue.  Those in DDA and the agencies know full well what the cost of care of each individual in a community setting is.  Each agency has negotiated with DDA the exact number of hours and supports that each of their clients will need.  It is no mystery.  Pretending that those with high support needs can be cared for at the “average” cost is nothing but a lie.

For instance, a couple of years ago I was given the daily rates for the cost of care of the 30 residents with the highest support needs and cost.  The daily range was $497 to $969 with an average direct care cost of $598.  If there was an “average” to use for the cost of care for residents in the shared community if they were to move to dispersed housing, this would be the average to use.  See this link for the chart with the costs and the support needs assessments of these clients. Highest 30 Residential Clients by Cost and acuity

I spoke with Russ Walker, Executive Producer for King 5 Investigators.  I brought up the issue of the dispersed community costs not including medical, dental, nursing care, prescription medications, and food – just to highlight a few cost centers.  Mr. Walker assured me that the costs did include these and they knew since Mr. Livengood had showed them the accounting for Alpha Supported Living. It’s interesting to note that the Certified Cost Report for Alpha Supported Living does not include these costs.  Certified Cost Report for Alpha Supported Living 2014

When looking at the actual data,  the calculations and cost accounts are very different than what is provided to our legislators and public.  When I have presented these differences to some legislators, Disability Rights Washington, the Developmental Disabilities Council and The Arc Chapters – the common response is refusal to communicate.    They have not been able to prove me wrong even when given the opportunity to do so.  I believe this means they are not able to prove me wrong.

Take a look for yourself and decide – what costs are missing from the community support side of the equation?  Do the costs add up as equal in your judgement and calculations?   Click the link for a table of the daily cost per resident.

Shared Community RHC and Alpha Supported Living Cost Comparison

I am using Alpha Supported Living as the example since this is the agency that Susannah Frame used in her investigation.  Alpha Supported Living is one of the better agencies yet the reimbursement from the state barely covers the cost.  Alpha has major fundraising campaigns to raise money to provide quality services to their residents.

Alpha Supported Living 990 2014

DDA Account Descriptions

“Last of the Institutions” – part 3

“Last of the Institutions” – Part 3 will air tomorrow (Wednesday, November 18, 2015) on King 5 in Seattle.  Susannah Frame, the investigator on this story has promised this segment will have the stories and view points of families, guardians, professionals and community members who support a full continuum of care for our most vulnerable.

I have been hard on Susannah Frame for the impressions that she has given with regards these issues.  I am hard on her since she has been given some information that contradicts much of what she has reported yet has not addressed the issues.  I thought that was what an investigation was intended to do and maybe I’m just impatient.

From my perspective and the perspective of many advocates for people with intellectual and developmental disabilities, Susannah Frame has only regurgitated the rhetoric we have heard for years without looking into why advocates claim the reports (which she terms “scientific research”) are misinterpreted and fall very short of addressing the diversity of the population.

Yes, it is true that MOST people with intellectual/developmental disabilities can live in small community homes and settings but we are not talking about MOST in this situation.  We are talking about those who have the very highest support needs and we are talking about safe, appropriate and integrative care.

It is also true that there are some people with these extremely high support needs who do live in small community family homes and settings.  No one disputes that fact either.

What we need to understand is that for these people who have extremely high support needs, their care is expensive – no matter where they live.  In fact, the cost of their daily personal care alone in a small community home is greater than full, comprehensive care in a therapeutic community.

We only have so many resources to go around and share with a diverse population.  What is disturbing to me is this so-called advocacy that wants to evict people from their homes only to push them into another community that will not be able to accommodate their needs.  This will then create a much larger crisis for those on the other end of the spectrum who only need a little support – they will go without.  Is this advocacy?

 

 

 

 

Shame on Frame – King 5 “Investigative” report

Susannah Frame is doing a great disservice to our community. Her total lack of appreciation for the diversity of our population of citizens with intellectual and developmental disabilities is more than problematic.   Without an understanding of this diversity one cannot even begin to understand the complexities involved in the care of our community members.  Below are some bullet points that need clarification from Ms. Frame:

  •  mentioned several times about biases in the “scientific studies” but fails to mention what those biases are.
  • refers to cost of care being less expensive in a community setting – but she has not explained what “cost of care” is or how it is measured.
  •  has not shown any indication that the cost of care is higher for those with higher support needs.
  • refers to the families who have had their loved ones in the RHCs for 20-30 years and are afraid – unaware that there are many young people who live in these therapeutic communities and many more who were denied this care.
  •  has not offered any solutions or real alternatives or how those alternatives could be achieved.
  •  seems unaware of the crisis in our community care system with so little oversight that many fear for their health, safety and lives in these community settings.
  •  has not addressed the issue of access to care in the community such as medical care and transportation.
  •  has not spoken with any of the agency service providers in the community about their inability to staff and appropriately care for an influx of people with very high support needs.
  •  has not addressed what a person’s community is and personal choice in making that decision.

If one is going to talk about de-institutionalization without addressing safe and appropriate supports in the community, this type of advocacy endorses neglect and risk for our most vulnerable citizens. The environment that is the Least Restrictive for that Person is the environment which allows that person to interact with and be part of the community to their fullest potential. As stated in the 1999 US Supreme Court Decision of Olmstead, for some that may be the institution.

The issues above need to be addressed and discussed in any conversation dealing with care of our loved ones. The answer is not arguing  “institution vs community” – the answer is to look at  the diversity of the population and understand their needed supports and then how to fund and maintain those supports.

“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.”  John Adams

Cost of Care

Yes, it is absolutely correct that DSHS costs for care in the RHC is greater than DSHS costs for care in a community setting. Looking only through the eyes of DSHS it would make sense to close the RHCs to save DSHS funds – but looking at the big picture of how things work that is exactly the opposite of what one should do if cost was a factor. .

Cost of care is one issue discussed  – but not what “cost of care” means for each setting nor the support needs of the residents in each setting.  The graph below is a good example of missing costs – but necessary costs for care.  Looking at the cost breakdowns for areas of care, it is clear the RHC provides a much more comprehensive package of care than the community settings.   The greatest cost of care in community settings is the personal care cost and for people with higher support needs, that personal care cost is extremely high as evidenced by the data from DDA.

RHC and Community Cost

All of these are included in the RHC Cost

Where are they in Community costs?

Other Costs

Resources:

Developmental Disabilities Administration. (2012). Cost of Community Clients with High Support Needs.

(2011). RHC Cost Details and Federal Reimbursement – CMS.

Community Cost of Care Reports, Public Disclosure Information Revealed. (n.d.). Retrieved from http://www.becausewecare1.com:https://becausewecare1.com/community-cost-of-care-reports-public-disclosure-information-revealed/

Clintsman, D. L. (2011). Assistant Director, Department of Social and Health Services. 30 Community DDD Residents – highest costing to DDD.

Atkinson, M. (2011). DSHS: Developmental Disabilities Services Overview. Office of Program Research and Senate Committee Services, Joint Legislative Task Force. Retrieved fromhttp://www.leg.wa.gov/JointCommittees/DDSSTF/Documents/Oct2011/DevDisabOverview.pdf

Barbara A. Lucenko, P. a. (2011). Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings. Department of Social and Health Services. Retrieved fromhttp://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pd

Support Intensity Scale. (n.d.). Retrieved from American Association on Intellectual and Developmental Disabilities:http://www.siswebsite.org/cs/SISOnline

Division of Developmental Disabilities: Intake and Determination of Developmental Disabilities. (n.d.). Retrieved from Washington State Legislature: http://apps.leg.wa.gov/WAC/default.aspx?cite=388-823&full=true

(Data taken from Certified Residential Program Costs of Care Reports for 2010. The agencies from which data was retrieved:

Aacres WA, LLC – Tacoma Aacres WA, LLC Abbott House –  Alpha Supported Living – Ambitions of Washington – Region 4 Ambitions of Washington – Region 5-  The Arc of King County – The Arc of Spokane –  Bethesda Lutheran Communities Camelot –  Centerpoint Services –  Community Alternatives for People with Autism –  Community Homes –  Community Integrated Services –  Community Living – Bellevue –  Community Living – Kent/Auburn –  Community Living – Kent Intensive Community Living – Sunnyside –  Community Living – Yakima –  Destiny House –  Educational Programs in Home Living –  Friends of Families –  Friendship House –  Group Action for Peninsula People –  Harbor Alternative Living Assoc. – Inglewood Residential Services –  Integrated Living Services –  Kitsap Residences –  Kitsap Tenant Support Services –  Life Skills Center –  Maksu, Inc –  Premier Care Services –  Provail  – Puget Sound Regional Services –  ResCare –  Shamrock Living Services –  Shared Journeys –  SL Start – Grandview –  SL Start – Seattle –  SL Start – Spokane –  Stand Together Total Living Concepts (2010)