Centers of Excellence – change from the bottom up

We often hear about Centers of Excellence but what does this mean?

I think it should be fairly obvious but apparently it’s not.  For parents, family members, people with intellectual/developmental disabilities (IDD), advocates, community members, healthcare providers, vocational and recreational support people, it generally means a community which interacts and supports those with IDD in all aspects of their life in a manner which provides the best quality of life for that person.  It is a collaborative effort from all angles.

This can be done but for some reason, even though we hear about needing centers of excellence, they are being broken down rather than built up by the very agencies which should be supporting them.

Here in Washington State the Developmental Disabilities Administration recently proposed a “feasibility study” at the cost of $601,000 to actually dismantle much needed Nursing Facility for those with IDD which also provides respite for many across the state, evicting the current residents from their home to create a “Center of Excellence” which has a totally different definition than one would expect. There are so many things wrong with this proposal which was most likely generated by a recent court decisions regarding people with mental health issues and the fact that federal reimbursement for care is better in the Developmental Disabilities Arena than in the Mental Health Arena.

This proposal needs to be stopped before it goes any further, wasting our valuable funds on things when those critical funds could be used for so much better, actually providing services and supports utilizing existing resources and building up what we have rather than tearing down, dismantling and rebuilding programs which would actually provide less than what we currently have.  This makes no sense.

Our state has a history of doing just that.  In 2012 Frances Haddon Morgan Center was closed, a Residential Habilitation Center  (RHC)which was home to over 50 residents and provided much needed respite care.  FHMC was also situated on the western side of the state providing an alternative which was closer to many people’s homes of origin.  This was a huge political mess with much misinformation provided and believed by those who made the decision but the decision was made which The Arc, the Developmental Disabilities Council and others celebrated as a victory.

At least one young man’s life was lost as a direct result of this closure and many others were displaced more than once from one home to another.  This alone is inexcusable.  The other issue is the misinformation regarding “cost savings” and the fact that many now are being denied services which could have been provided if FHMC was still operational.  FHMC is currently just a building, empty, sitting unused for many reason – it is a shame to walk through the campus and know what good use it could if only it would be allowed to be utilized.  Families and communities are hurting due to this decision.

What did happen was that there was no cost savings at all – in fact, just the opposite.  Rather than building several crisis care centers located strategically around the state, there has been one center for youth which has can serve up to 3 youth at a time.

The program which was built to “replace” FHMC has been open since December 2012.  To date they have served 12 children, only one of whom returned to their family home (which was one goal of this program). The current cost of this program is $1,165 per day.

This is the program for which FHMC was shut down for – how many people are now going without help, are suffering in crisis due to this huge error on the part of some so-called advocates?

We can’t let history repeat itself yet that is exactly what this “feasibility study” is doing.  It must be stopped before it goes any further.  Let’s look at what a “Center of Excellence” really is and build these up with the resources and available space we have – it’s all there already – it just needs to be utilized appropriately.

 

DDA CenterofExcellence

 

Protect Olmstead Report Language

Deinstitutionalization – The Committee notes the nationwide trend toward deinstitutionalization of patients with intellectual or developmental disabilities in favor of community-based settings.  The committee also notes that in Olmstead v. L.C. (1999), a majority of the Supreme Court held that the Americans with Disabilities Act does not condone or require removing individuals from institutional settings when they are unable to handle or benefit from a community-based setting, and that Federal law does not require the imposition of community-based treatment on patients who do not desire it.  The committee strongly urges the Department to factor the needs and desires of patients, their families, and caregivers, and the importance of affording patients the proper setting for their care, into its enforcement of the Americans with Disabilities Act.”

Although this language simply requires the Department of Justice to adhere to Olmstead when enforcing Olmstead, some federally-funded organizations that favor serving everyone in community settings without regard to individual choice and need, have somehow found this report language threatening and are now urging the Senate to reject it when it takes up the Senate Commerce, Justice and Science, and Related Agencies Appropriations bill as early as this coming Monday.”

Your letters and support are needed NOW to inform your Senators of this issue.  It is very simple – just follow this link:

VOR – Protect Olmstead Report Language

 

Please take action before it is too late!

THANK YOU!

 

Text above taken from the VOR website

Deny and Defend

We are all aware that our society is driven to lawsuits  but why is this?  I’m sure there are many theories out there but my theory is that the continual denial of any wrongdoing (by total mistake, ignorance or malice) and the inability to say “I’m sorry”, “you’re right, I made a mistake, how can we fix this?” or any acceptance of responsibility leads to anger and frustration on the part of the parties harmed which then leads them to the court – the last resort for some sense of reality check on what really happened.

What a waste of time, talent and money – money that could be used for good if only people (agencies) could accept responsibility and be accountable.

Working in Labor and Delivery for many, many years, knowing that at any moment a disaster could happen which would change the lives of the family, I saw every birth as a miracle – for many reasons.  Knowing that one moment in time a disaster could happen which was no fault of anyone but just happened in the birth process, I was amazed that any child came out alive (or mother for that matter.)  Yet, Obstetrics is one of the highest areas of litigation and also has some of the highest rates for malpractice insurance.  Yes, there is malpractice but not every thing that goes wrong is caused by malpractice or misjudgment on the part of the healthcare providers.  Things just happen.

In recent years I have been the involved in several situations in which I was told “you should sue” but I don’t want to sue just because I could.  I wrote letters to those involved and received apologies, acceptance of responsibility, strategies to improve and re-train the healthcare staff in appropriate practices and documentation.  That’s all I wanted – I just didn’t want others to experience the same things that we experienced when they could be fixed.  Why sue when people accept responsibility and make efforts to improve?

I am writing this post because I recently submitted an inquiry on the Washington State Auditor’s Citizen Hotline.  This past year the Washington State Auditor did a so-called audit on the Developmental Disabilities Administration.  This audit (DD Audit) was riddled with inaccurate and incomplete data and opinions yet was treated as “fact” in recent legislation.  It is shameful that this document was used in our legislative process for decision making.  Many of us attempted to point out the glaring errors in the DD Audit but apparently it is assumed the State Auditor has the facts and there is no need to question reports that are generated.  Interesting to note though is that our state paid over $400,000 for a local company which also subcontracted to an out-of-state entity, well known across the country, to be biased in assessing needed supports for our most vulnerable.

In submitting an online Citizen’s Hotline referral, I was hoping there may be some new insight into this issue and I may receive some sort of response which acknowledged the glaring errors.  I was so wrong.

I have attached the response letter that I received.  It is a great example of the “deny and defend” policy.  I now understood why people are driven to sue – I was more than angry – giving the Auditor an opportunity to accept responsibility and look at the errors and admit there were mistakes only lead to more denial.  The people in the auditor’s office cannot even see the facts or respond to questions that were asked.

I am more than disappointed with this – I am ashamed that we allow our government to treat us this way and am ashamed that those in our government cannot accept responsibility that they are given.

Deny and Defend policy hurts us all.  The medical field is learning this and is trying to change it’s ways.  By being honest and trying to promptly disclose medical errors and offering earnest apologies together with fair compensation, the medical community is hoping to restore integrity.  The hope is this will dilute the anger that is built up in those wronged by continually being told inaccurate and incomplete information which will in turn reduce lawsuits.

I would hope our government agencies take notice of this too.

Auditor response to citizen complaint

 

 

 

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.

 

Groupthink and The Seattle Times

Once again, The Seattle Times has disappointed advocates for those with intellectual and developmental disabilities.  Is Groupthink so powerful that people totally lose their sense of justice?  Does it prevent people from asking critical questions?

Groupthink results in defective decision making and large amounts of waste in human and material resources.  This is clearly evident in the past couple of decades with over 38 “work groups” that have been formed in our state to tackle the issues of supports for those with developmental disabilities – 38+ reports which have amounted to no decisions or progress.  WASTE of time, money and talents – is this due to groupthink?

Knowledge is power and we are becoming less powerful because knowledge is being kept from us.  Our media has let us down and The Seattle Times no exception.  Many people have written to the editors to try to educate them on the issue but since the knowledge does not agree with the groupthink.  We need to have a devil’s advocate to challenge and alleviate the ongoing groupthink but will this ever be allowed?

Not at the rate we are going!

Seattle Times Editorial – DD Waiting lists

I like to think that if the validity of a report is questioned, the responsible thing to do would be to check it out.  Not so with the Seattle Times with regards to a recent editorial “End waiting list for people with developmental disabilities“.

Yes, it is absolutely true that we need to end the waiting list for supports and services and for this I believe every advocate for people with developmental disabilities is thankful, but what the Seattle Times and other so-called advocates continue to talk about is the inequity of services and supports.  The “haves and have nots” as the recent DD Audit termed the problem.

I’m sorry that the Seattle Times editorial staff will not look at this issue and the concerns that have been raised regarding the validity of the DD Audit.  Our state should not base any legislation or policies on data which was reported in the recent state performance audit of the Developmental Disabilities Administration.

I submitted an essay to the Seattle Times regarding this issue but they have declined it.  I am publishing here in hopes that the citizens of our state read this and understand the problems and misleading and downright false information which has been reported.  We can not just accept without questioning – particularly when some major errors have been identified and pointed out.

In response to the recent editorial from February 9, 2014 entitled “End Waiting List for People with Disabilities”:

I fully support expanding community services for those with developmental disabilities and their families.  However, it is wrong to argue that the lack of services, supports, and funds for those in community settings is somehow due to the money spent on those living in the Residential Habilitation Centers (RHCs).  This “haves vs. have-nots” mentality has been propagated by supposed advocates for those with intellectual/developmental disabilities, and is based on misleading and biased research fostered by those with an agenda to close the RHCs, a move that would be disastrous for our most vulnerable citizens and entail not a savings but a much greater expenditure of funds.

Rather than seeking objective research, our State Auditor hired out-of-state “experts” who pride themselves on closing RHCs to manage the project team that provided the data for the Developmental Disabilities Administration (DDA) audit.  This has meant that the audit contains critical omissions, inaccurate data, and false assumptions, with dire implications for our system and those it serves.

What’s going on here is an extreme case of cost-shifting.  The RHCs are medical facilities providing full, comprehensive medical, nursing, pharmaceutical, psychiatric, therapeutic, vocational, recreational, and behavioral care in addition to daily staff helping with the activities of daily living for residents.  All of these services fall under the DDA budget.  Community support, on the other hand, entails individually utilizing programs and funds in an a-la-carte fashion from as many as seven programs under the Department of Social and Health Services (DSHS).

What is crucial to keep in mind is that a person with acute needs in a community setting draws on far more resources than what appears on the DDA budget.  They draw from DSHS Medical, Economic, and Mental Health programs, local and state budgets, emergency response teams, hospitals, clinics, therapeutic resources, and so forth.  All of these costs are ignored by the audit, which looks narrowly at the DDA budget alone.  Information on these costs is readily available through the Integrated Client Data Base, but the auditors chose not to look at it.  Had they looked, they would have seen that 35% of those on the DDA budget receive paid supports from at least three other DSHS programs.  Moreover, each residential agency is required to submit an annual certified cost report of its expenses, something again ignored by the DDA audit even though this data is crucial for understanding where the funds go and how they are utilized.  Finally, the DDA is even ignoring its own data.  Its cost of care figures show that the top thirty developmentally disabled clients in the community cost an average of $598 each per day, while the cost of the same level of care for those with similar needs is $248 per day in the RHCs.

Space does not permit me to note all the other flaws with this audit.  (For example, in assessing support needs, the auditors omitted four of the seven standard areas of assessment).  To sum up, the audit is little more than a hatchet job aimed at RHCs.  It ignores the information most pertinent to the actual costs of care inside and outside of RHCs, and manipulates what data it does use.  What we have here is a shell game, but its victims are not unwitting Seattle tourists on a Times Square vacation, but rather those who most direly need the services of the RHCs, and the citizens of our State who will be stuck with the bill for a “reform” that costs more but delivers less.

I do hope that The Seattle Times Editorial Staff will take time to read this information and re-think their support of such a false report.

Editorial board members are editorial page editor Kate Riley, , Ryan Blethen,  , , Jonathan Martin, Thanh Tan, William K. Blethen (emeritus) and Robert C. Blethen

Rule changes to serve “the unserved”

rule making

 

Washington State Department of Social and Health Services and the Developmental Disabilities Administration (DDA) has posted immediate rule changes to increase the capacity of families enrolled in the Individual Family Support Program (IFS).  The reason behind this change is to “enable families to continue caring for their family members in their own homes and help stabilize families and individuals who are experiencing increased caregiving stress and crisis by providing respite from their caregiving duties.” I wholeheartedly support the idea behind this rule  change but also understand that this is an attempt of too little, too late and does not even address the real issue.

DDA states that the families receiving funds at this time are not utilizing their full “awards”.  DDA reports that only 55% of the IFS funds were used for respite and that  only 8% of the total number of families have used 81-100% of their awards.  (see attached for full explanation and percentage of funds utilized) WSR 13-17-062 Rule Change for IFS

It is extremely unfortunate for our families in need that the right question is not being asked and therefore, the solution DDA proposes will not address the problem.

The right question is – When you have families in need and they are awarded funds for services which would help relieve some of their crisis, why are they not using the funds provided?

Asking this question might give some answers to the problem.   DDA skipped this important question in determining a solution. DDA has concluded that since these families are not using the funds, they don’t need them and so DDA has decided to reduce the award and give the unused portion to other families in need.  On the surface, this is a logical solution, but again, it is not the answer to the question that needed to be asked.

The real problem is that our state has put a limit on the number of caregiving agencies families are allowed to use with these funds. These contracts are only opened up every 3 years so no matter how much money is awarded,  we do not have caregivers who the state will allow these families to use these funds for.  We do have caregivers available, but since the state has closed their contracts, these families in crisis can not access the use of these qualified caregivers.

I know this for several reasons – as a family who had been awarded funds for respite and not being able to hire a contracted caregiver I was well aware of the situation in the family.   The funds were useless without a caregiver to use them for.  In no way did this mean that we did not need a caregiver  – it meant that there were no qualified, contracted caregivers available.  This not only drove us into deeper crisis.

Now I work for a Home Health Care Agency.  We are licensed, bonded, run extensive background checks on our employees and all caregivers are certified nursing assistants who are supervised by a registered nurse.  I was excited to work for this locally owned and operated agency for several reasons  – one of which was that I could be part of the solution (or so I thought) to the caregiving crisis experienced by our families.

What I found out was that DDA contracts  (although supposedly the waivers are participant driven with respect to choice of providers) were not available.  We were informed that Roads to Community Living, COPES and the New Freedom waiver had sufficient caregivers to serve their clients.  We were denied a contract with the Health Care Authority based on a WAC which pertained to agencies which had their contracts terminated ( given this was our first application this WAC did not even pertain to our agency).  We still have not had an answer to our inquiries and are bounced between various people – no one being able to give accurate information.

 

No wonder our families are in crisis – the Department which is there to help them and navigate them through crisis does does not know their own rules, policies and how to connect a quality care agency to those in need.

So, DDA has a long way to go in trying to solve this problem.  Given that they do not even know the questions to ask to investigate what the problem is and make up solutions to non-existent problems, there is little hope for improvement.