Whistleblowing

Someone needs to speak up and I’ll keep speaking up until some of these serious issues of healthcare inequity are actually looked at and corrected

A recent blog posting entitled “The Journey of a Whistleblower: The Challenges, the Pains and the Price ” identifies some of the issues when one is faced with some ethical decisions.

While my son was a resident at a state operated intermediate care facility, I brought issues of concern to the administration and the medical director.  When no action was taken, I approached the Human Rights Committee of the facility.  They did not think that the issues of healthcare neglect and injury were a concern of theirs.  I then went to the advocacy group for the residents of the facility.  The president told me that their goal was only to keep the facility open – they had no say in assessing or measuring standards of care.

Obviously the healthcare and quality of life for the residents was not on the radar of any of these groups.

So, I keep trying to get people, organizations, legislators and agencies to see the serious concerns with medical and nursing care at some of these facilities.

If your loved one was dependent on the care provided in a healthcare facility, would it be important to know that all the prescribed medications and treatments were administered?  Or would it be okay for the nurses to only administer sometimes but document that all prescribed administrations were completed?

Would medication compliance rates of 11-46% be acceptable to you?  These rates are certainly not acceptable to me.

But it’s not just the low compliance rates I’m concerned about – it’s the years of falsified records across the board on a variety of medications by many nurses that is a huge concern.  Who is to know if the medications are really administered with so little oversight?

Who monitors medication administration – apparently no one and this is a major problem that needs immediate attention.

There is immediate jeopardy to all residents of the facility until the medication administration problems are examined and corrected. It is shameful on the part of our state agencies that these practices have been and still are accepted practice.

As a nurse myself, I know this practice is unethical and illegal to falsify these documents.  I question the level of integrity of the nurses working at this facility who routinely engage in this illegal activity.

This time has come to go outside the state organizations and inform others.  It is not just about keeping a facility open, it is about providing safe, quality care.  Care that is not happening at this time.

 

Healthcare at the Intermediate Care Facility

Who oversees the healthcare at the intermediate care facility for those with intellectual disabilities (ICF/ID)?  If you have a loved one who lives in an ICF/ID it may be worth looking into this to ensure that the healthcare actually does at least meet the minimum standard of care.

This was not the case in the ICF/ID that my son lived in.  I first started noticing problems the first year he lived there and I tried to work with the team and work within the system to improve the care, provide education and collaboration.  As system after system broke down and my son’s health grew worse I was making more and more trips to his home to provide the care and treatments that were supposed to have been provided by the nurses and team at the ICF/ID.

I knew the medications were not being applied but since the nurses were charting as given that was proof that the medications were being applied as prescribed. The fact that my son was not responding indicated that more potent medications were needed in addition to other medical treatments to control his inflammation.  These other treatments are not without risk and actually do increase his risk of cancer but we needed to get the inflammation under control and his immune system stabilized.

I was visiting at least 4 times a week and would apply his topical medications when I visited – knowing that he would at least be getting them when I was there.  They were actually supposed to be applied twice a day  and were charted as being applied twice a day but that is not what was happening.

After we moved our son to supported living and his care staff  applied the prescribed medications as ordered his inflammation quickly was controlled.  In about one month’s time the inflammation that had been extremely problematic for 3 1/2 years was now in total control.  His lab work was essentially normal after 3 1/2 years of having hematological problems. The medications actually did work – they were just not being administered as prescribed.

Now that I have the actual pharmacy and nursing records to review, I have found 9 medications that were falsely documented as being given for 1-3 years.  As a nurse I am totally appalled at the lack of quality and integrity that was accepted and not even questioned and do not understand how these dramatic errors can go unnoticed and uncorrected.

Below are charts of 5 of the medications showing the dates of administration, the amounts the pharmacy (at the ICF/ID) dispensed and the amounts that were charted as given. The compliance rates are unbelievable!  Who would accept these rates as meeting any type of standard of care? Why is this acceptable at the ICF/ID?

medication-1medication-2medication-3medication-4medication-5

It’s not just nursing that was the problem.  There was to be a 90-day medication review or reconciliation.  The purpose of this is to check each medication and ensure it is still needed and is indicated and the correct dose is prescribed.  Obviously the medication reviews were not done (but were signed off as being done)  since 3 of these medications were only needed for a short time (1 month or less) but remained in my son’s active  medication profile for up to 3 years dispensed and signed off as administered.   Who really knows what was given and what was just charted on as given.

How is one supposed to know if a medication is working or not when there is this type of record keeping?

There are so many problems that can be identified just with these medication errors.  This is at a state operated facility and so far the state investigation has stated that the allegations are unfounded based on the fact that the nurses charted the medications as given as ordered.

The state agency that oversees this facility is the Department of Social and Health Services.  Unfortunately, complaints to the Medical Quality Assurance, Nursing Quality Assurance, Department  of Health, Pharmacy Quality Assurance are unable to provide any guidance since they do not oversee any of the services at the ICF/ID.  It is up to DSHS and they do not see any problems.

Residential Care Services has opened up another investigation to review these issues and other allegations healthcare abuse and neglect.  My hope is that this time they will be able to see the problems and work on a plan for correction so that the residents do indeed have healthcare that at least meets the minimum community standard of care.  Currently that is not happening.

 

 

 

Thrown Off Balance

The past couple of years have seen a shift in my understanding of the quality of care that is provided for individuals with intellectual disabilities.  What I had been told and what I had believed were not the reality of the situation and it has been a soul-searching experience to confront the issues and to take action.

We started experiencing problems in the year 2011 regarding issues of medical and nursing care that was substandard and downright neglectful.  I started working my way up the “chain of command” within the intermediate care facility which was just an exercise in frustration that I would learn would only get worse as the years progressed.  I didn’t want to make trouble and I didn’t want to have a big investigation done.  I just wanted the appropriate medical/nursing care to be provided for my son and others.

After I exhausted all avenues I knew for healthcare I then approached the Human Rights Committee and outline the Resident’s rights and how they had been violated.  Again,my concerns were discarded.  I approached the advocacy group for the facility and my concerns were not a priority.  Their priority was to keep the facility open and any issues that caused concern for care were ignored for fear it would give the “opposition” more fuel for closure.

While I am very concerned about the loss of access to campus based communities and intermediate care facilities, I do not want to compromise on appropriate healthcare that at least meets the minimum standard of care.  The care my son was receiving fell far below the minimum and I’m assuming that the healthcare of others was also compromised.

Jumping forward 5 years, the problems became more profound and pervasive.  It was at this point that the facility actually “self-reported” to the State Investigative Unit since I had claimed there was neglect on the part of the healthcare team and had become so frustrating trying to work with the “team” – as guardian I was excluded from most meetings and not considered part of the team or someone who needed to be consulted or listened to.   Neglect was the key word which was taken seriously.  Unfortunately, the actions taken were again just another exercise in frustration.

It was at this point that I actually started to ask questions about what state agency actually licensees and oversees the healthcare clinic.  I learned it wasn’t actually a “clinic” but only space that each professional was allowed to use for paperwork.  There was no medical director and there was no healthcare oversight.   This revelation was a huge problem with access to appropriate healthcare for the residents.

In my audit of my son’s charts I have discovered so many medical and nursing errors in addition to errors in policies and protocols that it is shocking.  For instance in the case of 90-day medication reviews there were over 8 medications that were charted as given once or twice a day by the nurse for a period of 1-3 years. They were not given – this was false documentation.   These medications were indicated at one time but at a 90 day medication review they should have been looked at and the questions asked if they were still indicated and if not, they should have been discontinued.  Instead the nurses just kept signing off they were given  – some had never even actually been given at all.  As a nurse I find this totally unimaginable.

This is not only a problem with nursing documentation but also with pharmacy reviews and the “team” 90 day medical review.  These reviews had been signed off as being done and in some cases a medical doctor wrote “med review – no changes” when there had been significant changes in just the couple of weeks prior to the review.  If I had been notified of these reviews or a 90 day medication reconciliation form sent to me, I could have very easily have seen what problems were there.  Being left out of the team and not allowed to perform my legal duty as guardian caused many problems.

At this time, until these issues are objectively reviewed by an independent investigator and the problems actually addressed and not swept under the carpet, I cannot support these types of intermediate care facilities.  The Federal Regulations need to be followed and the appropriate care provided.  I know in the case of my son this was not happening – I hope it’s not the case for everyone.

 

Who Watches the Watchman?

When allegations are reported and investigated – what happens if the investigators are actually part of the group the allegations are against?  Who provides an independent review of the allegations if the investigative agency can not be objective and actually do a real investigation?

These are questions I have regarding allegations of medical/nursing neglect and abuse  in the treatment of my son at the state operated intermediate care facility where he lived for 5 years.  The agency which does the investigation is the agency which runs the facility.  Unfortunately, even though the allegations are all medical and nursing care issues, the investigator did not have one healthcare provider review the allegations, documents or look into the fact that policies are outdated or do not meet the minimum standard of care.

But these “experts” have decided that the allegations are unfounded based on interviews with agency staff (non-healthcare) and administration.

We hear that the ICF/ID provides “comprehensive care” including healthcare and that there is oversight to ensure the care is being provided. Maybe in doing random surveys and looking at random samples, it may appear that the care is being provided.  Also in those surveys they do not look at the quality of healthcare or if the healthcare meets the community standard of care.  They seem to check that the providers have current licenses to practice their profession.  I think that we all know that having a license is not the same as providing quality care.

In my attempts to have an objective investigation I have contacted several other agencies in the state, including the Department of Health, and have gotten nowhere.  They all point to the Department of Social and Health Services as the agency providing oversight of the care.  Even though the ICF/ID is a medical facility by federal definition, our state defines it as a long term care facility yet the Long Term Care Ombudsman does not consider it a long term care facility and is of no help.

Clearly there are issues of neglect and abuse – any sane person could look at the records and documents and make that conclusion – for some reason though the Department of Social and Health Services and their investigative team has chosen to continue this neglect by failing to see the obvious and make corrections.

The issues fall into various categories of medical malpractice, medical neglect, restraints without consents, multiple injuries including fractures, false documentation of over 8 medications for over 2 years, failure to communicate with guardian regarding psychotropic medication changes, failure to provide prescribed medical treatments and transport to medical treatment center for prescribed treatments, applying splint to wrong foot, applying splint over shoe rather than inside shoe and failure to protect from client-to-client abuse are just a few of the allegations.  Maybe some of the issues actually fall into criminal categories.

Certainly in my mind the lack of ability of the investigators and the DSHS administration to do an objective and fact finding investigation is criminal.

Does one need to file a lawsuit to get anything done about this?

 

 

Healthcare disparity in Washington – what about your state?

As I am in the process of trying to remedy a healthcare disparity situation for people with intellectual and developmental disabilities, I am very curious how the oversight of healthcare in the Intermediate Care Facilities for People with Intellectual Disabilities (ICF/ID) is managed in the various states.

In Washington, we refer to these communities as Residential Habilitation Centers (RHCs) and are either State Operated Skilled Nursing Facilities for people with Intellectual Disabilities, an ICF/ID or a combination of both types of facilities.  The 4 remaining RHCs are all campus based communities.

One of the several problems that I have encountered in this journey is that the laws and rules are different for skilled nursing facilities  (SNF) and the ICF/ID even though they are both under the RHC umbrella.  The SNF clearly has full oversight by the Department of Social and Health Services and is clearly a “long term care facility” by  both state and federal regulations. The residents of the SNF are represented by the Long Term Care Ombudsman in our state.

In the Revised Code of Washington (RCW) the ICF/ID is not included in the definition of “long term care facility”  yet it is considered a long term care facility by the Department of Health, the Department of Social and Health Services and the Health Care Authority – but under the FEDERAL SOCIAL SECURITY LAWS  the ICF/ID is considered a healthcare institution and that the resident’s healthcare be provided for under the Social Security Act. The RHCs are promoted as “full service, therapeutic communities” and it is believed that the “healthcare clinic” is a licensed clinic when it fact there is no healthcare oversight of the medical and nursing care provided at the RHC to ensure the standards and quality meet the current standards of care.

The medical providers at the RHC act as the primary care providers for the residents and even if a resident is seen by a community provider or specialist or referred to another provider, it is the RHC provider that is required to write the order for medications to be prescribed or for nurses to carry out treatments. The healthcare for RHC residents is managed as a “health home” with the exception of policies , quality standards to meet and oversight.

The ICF/ID functions as a “Medical Home” as the healthcare provider for the residents.   The definition provided in  RCW 74.09.710 states the following:

“Medical home” means a site of care that provides comprehensive preventive and coordinated care centered on the patient needs and assures high quality, accessible, and efficient care.”

“Health home” or “primary care health home” means coordinated health care provided by a licensed primary care provider coordinating all medical care services, and a multidisciplinary health care team comprised of clinical and nonclinical staff.

As I read the Social Security Laws and the Code of Federal Regulations, it seems clear that the State health agency should be responsible for establishing and maintaining health standards for the recipients of medical assistance under the plan (as all residents in the RHC do).

This is clearly not happening in Washington – what about your state?

 

healthcare-disparity-letter-to-legislators-redacted

 

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?

 

 

 

Better and cheaper?

There has been an ongoing investigative series entitled “The Last of the Institutions” on King 5 News by reporter Susannah Frame in Seattle, WA.

As an advocate for choice and appropriate supports for people with intellectual and developmental disabilities I have been greatly troubled by the continued misinformation that was presented in what I consider to be extremely biased reporting.  When I first learned of this investigative series I was hopeful that some of the myths that have morphed into “facts” would be proven wrong.  Ms. Frame was provided with much factual information from reliable sources but she chose to ignore them and continue to fortify the myths with more of the same misleading and incomplete information which has been the basis of this argument for many years.

During the past 6 months time that the series has aired I have had the opportunity to move my son from the RHC to a supported living home.  Also interesting to note the reasons cited on both “sides” of the issue were the opposite reasons of why we made this decision.  During this transition I have also verified that the cost of care for those with high support needs is as much or more in a community setting than in the RHC – but the costs are hidden due to various budgets providing different supports.

We did not move our son due to being segregated at the RHC.  In fact, he is so well connected in the community that whenever he goes out he runs into people he knows.  He has a supported employment job at a local hardware/garden store 2 hours each weekday morning and is a frequent shopper at the nearby grocery stores.  He is a frequent participant in any local music or community event and has attended weekly mass at the same church he has gone to his whole life. He sees many of his student peers from his high school in the community as they get jobs at various local restaurants and other stores that he regularly frequents.  He was far from segregated!

In addition to the community at large, he loved his campus community.  There was always a new person to say “hi” to and get to know what country they were from.  He loved memorizing people’s schedules and asking them what they are doing.  This constant interaction with others coming and going is something that he will miss moving from a campus community.

But, contrary to what we hear about comprehensive care at the RHC we did not experience this for his care.  The “team” did not include us (parent/guardian) in discussions about care and they refused to listen to us about our concerns.  We were constantly trying to work collaboratively but continually being denied the opportunity to do so.  We were even denied multiple requests by us to teach the nursing team and personal care staff how to appropriately do some of his care treatments being told that we are not allowed to teach them.  At one point the superintendent told us that there are “team decisions and then there are medical decisions” meaning that they saw no need to include us or listen to us about medical/nursing concerns.

It was ultimately this refusal of the medical/nursing team and their sub-standard care that led us to seek an alternative.  Given how the system works the MD who is at the RHC needs to write all the orders for the nurses to be able to give the medication or treatment.  The recommendations by my son’s medical specialists in several specialties were not followed by the MD (although no discussion or conversation occurred to inform us that the specialists recommendations were not going to be followed) at the RHC and therefore my son was denied the prescribed treatments.  This led to many problems and issues of neglect of care for which he will have life long complications.     The community standard of care was not maintained (at least in our experience) by the medical/nursing team at the RHC.

So it was in search of quality medical/nursing care with providers who would work with us that  led us to seek a different setting for our son to live in.  It took over a year to find an agency that could accommodate his needs and also a home that is in our community but we succeeded and he moved in the middle of March to his new home.

We just received the notice from the Developmental Disabilities Administration regarding the cost of care (from their budget) for our son.  DDA will pay the agency $418.15 a day and a delegating RN $26.58 a day to provide delegation services.  My son needs to pay his own rent (from his SSI and rent subsidies) and utilities, he will have food stamps to help with the purchase of food and his medications, medical supplies, physician services and other medical costs will be covered by our insurance and Apple Health Care.

So while this may appear less expensive when only looking at the DDA costs, overall it is more expensive for the state when looking at all budgets included in providing care to those with high support needs.

But this daily cost of care is not the whole story either.  The quality of care provided by the Direct Care Staff, Agency RN, Health Care Coordinator, Program manager and others involved in the agency team is far above that we experienced in the RHC.  The continuity of daily staff has already greatly improved his day to day care.  Issues of concern are readily picked up on and taken care of.  The integrity of the program is high and the people we are involved with are conscientious about their jobs.  There is more opportunity for individualized attention and care which helps to promote health and learning.

The policy in the RHC was to rotate staff daily thereby prohibiting any one staff person from being able to see trends that may be occurring and making it very difficult to communicate needs and have follow through. When I had an issue that needed to be corrected the manager denied that there was a problem – if there is no acknowledgement of a problem there could be no solution.  Hence, we had years of the same issues continually repeating themselves with no resolution.

I continue to support the RHCs and campus communities realizing that everyone has different needs and we need to have resources to accommodate all types of people.  The RHC did not work out for us in the long run but it was a lifesaver for several years.  We need to continue to support this option for those who need it and for those who choose it.  If we deny these services we are essentially promoting negligence of care.

“Institutionalization” is not always the wrong answer – it’s often not the first choice or a choice for everyone but it is the right choice for some and we need to honor that.

Last of the Institution Series letters to S. Frame

 

 

 

 

 

Closing the Gap – Healthcare Disparity

We often hear about the oversight of care that is provided in the state-run Intermediate Care Facilities.  While this may be true for some aspects of care it is not true in regards to the medical/nursing care that my son has received.  I am writing this so that others may learn and be aware and know to ask about the oversight at their own facilities.

The situation I will refer to is only in regards to my son and the residential habilitation center in which he lives.  I am recounting my story so that others may be aware and begin to ask questions to ensure that the medical/nursing care has some oversight by those who are knowledgeable in the community standards of practice for medical and nursing care.

Over the past several years my son has had a variety of health problems.  I tried to communicate with the healthcare providers at his center but my observations were ignored and I was ridiculed by some of the providers. Other providers refused to listen to my concerns – instead stating “staff has not reported that.”  In several cases I ended up taking my son to the local ER to get a diagnosis and treatment since I was not making headway with the healthcare professionals who were supposed to be his primary care providers.  At the ER my suspicions were validated and found to be correct but by that time my son had suffered more than he should have.  He has also developed some life-long complications from some things that were not diagnosed and treated appropriately by these so-called primary care providers even though I had given them the information and had requested the specific tests to be done.  My requests were denied.

As a Registered Nurse myself, I really had difficulty with this.  Trying  to collaborate but not be overbearing or controlling and not putting my son at more risk was a tricky situation.  One nurse manager also told me  “you need to separate being a nurse and a mom.” Also, I could not understand why the community standards of practice were not followed.  Assuming that the “Primary Care Clinic” on site and the infirmary were licensed and had oversight by the Department of Health was the first mistake.

While the Department of Health oversees the healthcare in other state institutions, community healthcare centers, home health care agencies and hospitals, they do not oversee the Intermediate Care Facilities.  In our state, this is delegated to the Department of Social and Health Services.  I learned about this after an investigation which clearly showed neglect and inappropriate medical and nursing care was returned “allegations unfounded”

I was not only dumbfounded but angry.  The investigator had even included a copy of the Nursing Protocol for one issue and the nurse had clearly not followed  it  yet that fact was not even addressed – it didn’t seem to matter.

A couple of months later my son developed sudden significant pain and swelling in one of his feet.  This would now be the 4th foot injury in 10 months that he has had.  Given the localized swelling and tenderness I suspected a break and requested an xray.

Assessment by RN 1 – “no pain or bruising,   normal swelling present” will go away after he has had his foot up for the night – communicated that I did not agree and would like xray if still swollen in the morning.  Report called to MD – no orders

 

swelling day 1

 

Assessment by RN 2 – No swelling, not warm to touch, no pain upon palpitation, no distress walking, no signs of fracture, nothing at all.  She notified MD and he agreed with her assessment that no action would be taken unless nursing sees something to indicate client had a fracture.

MD did not assess client himself but took this assessment of the RN as fact even though he was aware that I had requested and was still requesting an xray.

I requested at least for an Ace wrap or his splint to be applied.  I was refused this by nursing because the assessment was that he did not need it.

swelling day 2

 

Assessment by RN 3 – stated that swelling appeared decreased and client said “no” when RN asked him if he wanted the splint on – taken as refusal and RN did not attempt to apply splint.

Assessment by RN 4 – small amount of edema and bruising – notified MD and stated that mom would like to have an xray done.  MD refused saying that he does not order xrays just because a mother wishes it to be done. RN returned to repeat assessment.  There was now more swelling and tenderness – told MD that mom would take client to the ER if he did not order an xray.  He then agreed to order the xray

Swelling and bruising day 3

Result – Fracture of 5th metatarsal and placed in cast-boot.

Again an investigation was done by the State Investigative Unit under Department of Social and Health Services.  Photos and a video were sent to all involved and also reviewed by the investigator.  It was clear to me that this situation had not been handled appropriately but again, I was dumbfounded to receive the results of “allegations unfounded.”  There was one citation though regarding the failure of RN 1 to write a note on a form regarding her first phone call to the MD.  The plan of correction by the nurse manager was that this form was obsolete and not used any more so was removed from the nursing protocol.

There was not one word about the lack of quality of care  – it does not seem to matter.  

I had a meeting with the administrators and two of the MDs ( not the one that was involved in this particular situation) and asked about professional peer review for the issues that I have raised over the years.  That idea had never crossed their minds and they were all unfamiliar with the concept.

I am now trying to get the word out there, writing to our legislators, the Department of Health, Residential Care Services in the Department of Social and Health Services to remedy this complete gap in care for our most vulnerable.  These residents do not have the oversight and wrap around health and social care that we have been led to believe.

Yes, I am angry – angry at myself for trying to collaborate and work together for so many years and not realizing the healthcare team does not have oversight to ensure their standards are up to date and are adhered to

Angry that my son has suffered and now has life-long complications from the refusal of this “healthcare team” to listen to what I was telling them about my son

But mostly angry at the facility and the agency for failing to provide the quality and standard of care that they have been entrusted to provide.

I have no answers now.  The Department of Health is not able to investigate since they do not license the facility.  I was told to write complaints for each individual practitioner.  This has been done and is in process.

I filed a complaint with the Residential Care Services to look at the Federal Regulations regarding quality of care, utilization review and standards of practice.  They seemed to be a little confused on what I was referring to.

I will keep pressing this issue – my son will be taken care of.  He now has a full team of healthcare providers in the community but my concern is for those who do not have advocates and have to rely on the healthcare that is sub-standard.

If this was your child’s foot what would you do?

 

 

 

 

 

We need to provide choices – not restrictions

Please view the video which highlights the need for choices and options in our efforts to provide services and appropriate care and homes for those who live with intellectual and developmental disabilities.  This is one example of many that need to be options allowed and promoted.

 

 

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.