Mental Age?

Motive asymmetry – the belief that one groups motives are driven by love, care and affiliation and the rivals are motivated by the exact opposite.  This term is generally referred to with regards to political conflict but I see fully activated in the issue of advocacy for those with intellectual and developmental disabilities.

It feels to me that motive asymmetry is at play with regards to trained self-advocates and parents/guardians/healthcare professionals/case managers/disability advocates when any topic related to care, support, employment, inclusion, residential settings and community environment are discussed.

As a parent/guardian/disability advocate, this concept is very clear to me since I have been told by many trained self-advocates that guardians are only self-serving. This is truly not my perspective at all but it is attributed to me since I am a guardian. One effective tool used to help bridge this conflict is to meet in person. Once you know the person, views and ideas may change. It is only by meeting people and working together as people, rather adhering to  inflexible ideologies, that we can break down these silos and make progress.

Mental age theory

Ivanova Smith has written an article in NOS Magazine regarding the issue of using “mental age” as a description for people who happen to live with an intellectual and developmental disability.  She states “We need to educate medical professionals that there are better and more respectful way to explain the needs of people with Intellectual/developmental disabilities. Difficulty doing specific tasks isn’t the same thing as being an actual child.”

I have never seen this description used to state that an adult with IDD is a child – they are adults who have a variety of support needs in many areas of life skills.  Using labels and descriptive terms for various ranks, steps or skill levels are used in all types of employment, school, sports and athletics,  and hobbies.  One must pass through step 1 to get to step 2.  This is a natural progression.  One need not necessarily master the step but at least have a passing effort before one is able to proceed or progress.  There could be many reasons for a rapid or slow progression through these levels.
People do not excel in all areas of life and do not need to be an expert in everything they attempt to have enjoyment and meaning from it. Also, people may “stall out” at one step and many years later may revisit and then gain more skills. This is not set in stone as it is a fluid process and there is always learning and progress occurring as people experience life. This progression is also true with developmental, emotional and maturity stages. It is not “good” or “bad” but just is.

I often hear that people do not like labels – but labels help us to learn and navigate life in so many ways. Think for instance of working in trades – there are labels applied to levels of skill development – apprentice, journeyman, master. One is not a better person than another by having a different label but has a different skill set. These labels help us, who may not be familiar with the work to be done, who we might want to seek out for consultation. Labels are not inherently bad but can be extremely useful in many situations.
I am asking for your input into how you, as a trained self-advocate, differentiate between people who may need an extreme amount of support to manage the daily activities of living versus someone who may only need some occasional guidance with specific areas? How do you, as a trained self-advocate, differentiate between someone who is unable to utilize public transportation and needs to be driven everywhere in a private vehicle versus someone who can navigate the city independently on public buses?
Or maybe you do not see the need to differentiate – if not, why not?

Please contact me Ivanova – I would love to meet with you in person.

Thank you – Cheryl Felak

 

Have you ever heard the phrase “that person has the mind of a five year old In an adult body?” It is something many adults with intellectual disabilities, like me, have to deal with. For years, medical professionals have told parents of newly diagnosed Intellectually disabled people that they would mentally be children for their entire lives.…

via Mental Age Theory Hurts People with Intellectual Disabilities — NOS Magazine

#inclusivity  #diversityisstrength  #YouAreTheChange  #beyondinclusion  #disabilityrights  #intellectualdisability   #disabilitysupport  #mentalage  #agetheory

 

Washington State Institutions

Washington State has an “interesting” concept in place with regards to the campus based communities for people with intellectual and developmental disabilities.  The term used in Washington State is Residential Habilitation Center (RHC).

What makes this term very confusing is that the RHC could be a Specialized Skilled Nursing Facility (SNF), an Intermediate Care Facility for People with Intellectual and Developmental Disabilities (ICF/IDD) or both.

What makes the term RHC even more difficult is the fact that there are different rules and regulations for the SNF and the ICF/IDD so when one talks about the RHC which type of facility is one referring to?  Most people do not realize that when referring to the RHC they are actually referring to two different types of institutions.

what-is-an-rhc-2017

Nursing care is an area of concern for those who live in the ICF/IDD.  Even though the ICF/IDD is defined as a healthcare facility under the Social Security Act, Washington State does not define it that way.  The ICF/IDD also does not fit under the definition of “Long Term Care Facility” by Washington State Law but many consider it a long term care facility.  This ambiguity about what the ICF/IDD leaves the residents floundering in limbo without appropriate oversight for the care that is to be provided to the residents.

This issue is clearly seen when looking at who does the surveys and investigations in each type of facility.  The SNF has all registered nurses on these teams while the ICF/IDD rarely has a healthcare professional on the team.  Even if allegations are written concerning medical, nursing or other healthcare related problems, there is no healthcare professional on the investigation team to assess the situation.  This is a problem.

rhc-investigations-2016

There are several solutions that can be examined for this error.  The first solution would be to transfer oversight of the healthcare from the Department of Social and Health Services to the Department of Health.  Another solution would be to include registered nurses or other healthcare professionals to do the investigations and surveys.  At the minimum the healthcare professionals should be consulted for any allegation that pertains to healthcare.

 

“Allegations Unfounded” ?

Medication error rates of 52-89% on several medications is neglect.

Failure to apply splint correctly 85% of the time is neglect.

Neglect occurs when a person, either through his/her action or inaction, deprives a vulnerable adult of the care necessary to maintain the vulnerable adult’s physical or mental health. Examples include not providing basic items such as food, water, clothing, a safe place to live, medicine, or health care.

Signs of neglect. (from Washington State Department of Social and Health Services)

The above examples of error rates are just a few that have occurred to my son while living at a state operated intermediate care facility for those with intellectual and developmental disabilities (ICF/IDD).  These issues and others have been reported to the administration and there have been several investigations done and the conclusions returned have been “allegations unfounded.”  I find these conclusions indefensible given the documents that have been submitted for review.

One such issue that went on for several weeks started when my son developed swelling and pain in his right ankle – the ankle that had very recently recovered from a serious sprain.   The lack of response from the medical and nursing team from the very beginning of this injury being reported to the day I removed the splint was met with frustration. It was a very simple and straightforward issue that could have had a very simple and straightforward response – it turned into something totally different.

It was not until I was totally frustrated that I even mentioned the word “NEGLECT” and that is when the superintendent “self-reported” to Residential Care Services  (RCS) and the first investigation was done.  That investigation took several months to complete and the allegations were deemed unfounded.  During those months I was not allowed to talk with anyone at the facility regarding the care since it “was under investigation.”

This is a link to the email exchanges that I had with the Health Care Coordinator (HCC – RN), the Nurse Manager (RN4), the Habilitation Plan Administrator (HPA) and the ICF/IDD Superintendent.

neglect-with-foot-splint-at-fircrest-june-2015

splint-on-wrong-foot-upside-downsplint-on-left-foot-should-have-been-on-right-foot

 

Since that time, I have requested to have the issues investigated again and have provided more documentation to RCS.  I have felt as if I have been the one being investigated because each conversation that I have had with an investigator has started with what they have heard about me – trying to find issues with what I have reported or how I have acted.

The only thing that they have been able to say is that the photos that I have provided are not “proof” because I could have photo-shopped them.  Their “proof” is the documents and charting of their nurses and staff (which now have been found to be in error when trying to reconcile medications dispensed to medications documented as administered).  They have not and will not consider email correspondence or medical charts from outside medical providers.  They have not enlisted healthcare professionals to review the allegations of medical and nursing neglect until this very last investigation involving almost countless medication errors.  Yet, I am the one who is looked at for wrong doing.

In doing the research for these allegations I have learned that the Department of Health and therefore the Nursing Care Quality Assurance Commission has no ability to investigate since they are not the licensing agency for the healthcare provided at the ICF/IDD.  Since the issues are systemic to the nursing care at the ICF/IDD it is up to the licensing agency to investigate.  Here is a link to the letter I received from the Nursing Care Quality Assurance Commission – Discipline Section, Health Services Consultant.

dshs-needs-to-look-again-at-nursing-neglect

So, it’s back to the drawing board of contacting DSHS and asking for explanations of why the allegations are unfounded.

All residents are at risk of harm until these and other issues are acknowledged and corrected.

 

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.

 

 

 

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?

 

 

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 – Part 5

Unfortunately, once again, Susannah Frame has mislead people in this “investigation” series on King 5 in Seattle.  There is much to clarify in this recent segment which aired December 8, 2015.

Myth 1

“Only a handful of states operate more institutions for people with developmental disabilities than Washington. And in Washington, more people live in these segregated settings than most of the rest of the country”

Fact of the matter:ICF ID Table 2013

The above table is only the STATE Operated ICF/ID’s

26 states have fewer State operated ICF/ID s for a total of 25 facilities which are home to 11, 294 people (Average per facility – 451 people)

24 state have more State operated ICF/IDs  for a total of  828 facilities which are home to 42,553 people (Average per facility – 51 people) –

Hardly what I would call a handful of state (or facilities for that matter!)

 ICF ID Chart by state 2013

Myth 2

“Since the 1970s when the deinstitutionalization trend started, 16 states have closed all of their institutions that once housed the developmentally disabled, including Oregon, Alaska, and Hawaii. And 21 states, including Idaho, have fewer than 100 residents total living in these types of public facilities”

Nursing Facility and over 16 residents 2013

CMS cost reported by states 2013

The above table is taken from the CMS-64 report.  Again, Susannah Frame is incorrect with her “facts”.  There are only 8 states that have not reported funds for a STATE OPERATED ICF/ID.

It is interesting to note of those states with no costs for a state operated ICF/ID,  6 of those reports costs for private ICF/IDs.  Some of these are quite pricey to the states that have them.

Interesting that only 12 states do not have a large State operated Facility and only 7 states have less than 100 people in these state operated ICF/IDs and Nursing Facilities.

More to come about the private facilities in each state and the funding for both the ICF/IDs and the Home and Community Based Waivers (HCBS).

I believe Ms. Frame and King 5 have some additional investigative work to do.  This is a very sloppy example of research which they are promoting.

Myth 3

According to Mr. Bagenstos, supposedly a “top Department of Justice attorney in the Civil Rights Division” Washington state “remains kind of stubbornly, an outlier”

Look at the tables above and see for yourself.  By the definition that I understand, Washington is CERTAINLY NOT an “outlier.” 

That’s all for today – more myths to be examined from this episode withing the next few days.

Data Retrieved from the following resources:

Medicaid Expenditures for Long-Term. (n.d.). Retrieved from http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/downloads/ltss-expenditures-fy2013.pdf

(2013). Residential Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through Fiscal Year 2011 (2013). National Association of State Directors of Developmental Disabilities Services (NASDDDS), Human Services Research Institute (HSRI), Association of Professional Developmental Disabilities Administrators (APPDA). University of Minnesota.

United States Census Bureau – Population Estimates – National Totals 2014. (2014). Retrieved from https://www.census.gov/popest/data/national/totals/2014/index.html

Univesity of Colorado Department of Psychiatry. (2015). The State of the States in Developmental Disabilities. Retrieved from http://www.stateofthestates.org/index.php/intellectualdevelopmental-disabilities/state-profiles

 

The Olmstead Decisions is Misinterpreted

 

 

Happy ADA Anniversary – DDC Interview tomorrow!

ON this eve of my interview with the Washington State Developmental Disabilities Council I am thinking of all the people who are not able to have their voices heard.  My hope is that the DDC does uphold the 1999 US Supreme Court Decision Olmstead v. L.C. and that they do honor person centered planning.

My hope is that they understand that “inclusion” is defined by the person and what is optimal for that person.  This has been a very difficult concept for many to understand.  Also, we need to take into consideration all the caregivers and support people and what “inclusion” means for them too.  We are all in this together and we need to work together for what is best for the whole.  Not everyone is going to get their way with everything but that does not mean that there are not success stories.

Updates after the interview –

Where’s the Respite Care?

We hear that many people are in need of respite care and I’m sure this is true.  I know that when my son was at home the thought of having respite care provided was just a dream.  Even though he was on a Home and Community Based Waiver which included respite, he was never approved to have respite.

With respite “beds” in such dire need, it is mind-boggling to me that those who need respite and some major advocacy groups still desire to close the Residential Habilitation Centers (RHCs) in our state. They are oblivious to the facts that the RHCs are part of the continuum of care, providing care for many from various community settings.  If they are aware of the facts and they advocate for closure or consolidation, they are really advocating against safe and appropriate care for those who need respite.

For the time period from July 2012 through August 2014, there has been a steady rise in the respite care at our four remaining RHCs.  Yakima Valley School, the RHC which has most recently been “studied” for closure, serves an average of 34 community respite clients per month.

When talking about the RHCs these so-called advocates talk only about the permanent residents of the RHCs.  We hear that there are only 70 people at Yakima Valley School – forgetting that over the past 2 years there have actually been 920 people served there.  Many more people from the community are served at Yakima Valley School than permanent residents.

This is a part of the discussion that needs to be heard.  The RHCs are part of the continuum of care and serve many people who reside in the larger community.  Without the RHCs, where would these people receive the much needed respite?

Cleints served at Residential Habilitation Center

 

The cost of care in the Residential Habilitation Centers is mostly for community care – the permanent residents are less than 50% of the number of clients served.

If The Arc chapters and the Developmental Disabilities Council continue to advocate for consolidation and closure of the RHCs, they are only advocating for fewer and fewer services, both for those in the community and those who are the permanent residents of the RHCs.  Where would all the people go and receive care?

Data from Executive Management Information System – Department of Social and Health Services

Washington State

July 2012 through August 2014

Crisis Care in Crises

It’s not secret, our state has made a huge mistake. We have legislated a huge gap in care for our families experiencing life with intellectual disabilities, particularly if the person is 21 or under.

In 2011 our state passed SSB 5459. This bill had several critical errors – some based on faulty cost reports and projections and some based on poor judgement and understanding.

Poor Judgement and Understanding:

Crisis care, respite and intense out-of-home placements were eliminated for those 21 and under. The thought was that “children need to be at home with their families.” Yes, that is true but as one of the directors of the newly forming Crisis Stabilization Unit testified, “some families do not want their kids back home.” That statement made me physically ill because it stigmatized families who are not able to safely care for their children, no matter how much they WANT them at home, it is impossible. To say these families “do not want their kids” home shows such disregard and misunderstanding for the stress these families live with.

Five years ago I never, ever would have imagined that I would not be able to care for my son. On the eve of my 55th birthday, as I look back over the past 5 years, our family went from one of unity and cohesiveness to obliteration. The only reason that we are here to tell the tale is due to out-of-home placement at the intermediate care facility when my son was 15 years old. The heartache I felt making this decision was unbearable and still, today, it greatly saddens me that I cannot care for my son – no matter how much I would love to, I can’t.

In the past 5 years not only did my son’s dementia worsen which led to prolonged mania and psychosis – on top of his already profound developmental disability, but in my attempts to care for him, my health plummeted. I have had 27 hospitalizations and/or surgeries in the past 5 years with many complications. Injuries incurred from caring for my son began to build up over time and I felt like I basically imploded. The development of a chronic lung disease (autoimmune) and the related symptoms make it impossible for me to care for my son – yet people don’t see this part of the family’s lives.

Rather than understand, people judge – as the director did of the families who could not have their child return home.

Faulty Cost Reports and Projections:

Frances Haddon Morgan Center (FHMC) was closed. FHMC could care for 60 individuals with full, comprehensive, intense crisis care, provide much needed respite, and provided much of the care for our youth and for those with autism. There were some extremely costly errors which led to “savings” projections which were actually Costs. This never should have happened, but it did.

I can’t even begin to write about the stupidity of the decisions so am just providing this photo. I think it will give an idea of what happened – how much more money was spent to serve about 1/10 the people – certainly not a cost-effective or sustainable decision – serving much fewer people for over twice as much!

average cost per day per resident

According to Informing Families Building Trust (Developmental Disabilities Council) the passage of SSB 54559 in 2011 created a huge gap in services. 

Not only did this bill close Frances Haddon Morgan Center but also prohibited those under 21 from being admitted to an RHC.   Many of those in this age group would have gone to Frances Haddon Morgan Center for crisis care and respite. 

To bridge that gap, DDA opened a house in November 2012 which could house 3 youth ages 8-21.  The services are very similar to what was provided at Frances Haddon Morgan Center.  The goal was to take these children as they are in the community, stabilize them as much as possible and slowly integrate them back into the community.

There have been 7 children able to utilize these services, 2 are currently residing there, of the 5 who have left, only 1 was able to return home with supports.  The other 4 were placed in voluntary placement services – an intensive out of home placement for those under 21.

Please review the “savings” from closing Frances Haddon Morgan Center.  According to the reports we would have had a large savings to not only open two crisis stabilization centers but provide more community care.  Unfortunately, the projections were so wrong that we have now created more of a crisis.

Please do not let this happen again – It is critical to review the DD Audit and understand the information provided in that report is as skewed or more than the data provided in 2011 for the disasters that SSB 5459 produced.