Tag Archives: comprehensive care

Pilot Program Promising

Comprehensive, coordinated and cost-effective care – this is not impossible!

Children’s Comprehensive Care Clinic is a pilot program in Texas which is showing promise.  In Washington, we could expand on this by utilizing the campus communities at the Residential Habilitation Centers to become “Comprehensive Care Clinics” for our citizens with developmental disabilities.  The report, Medical Care Task Force Jan 2002,  outlines a process to establish comprehensive, coordinated and cost-effective care.

When looking at cost of care for residents in the supportive communities or dispersed communities, some of the major costs that are not included in the dispersed community costs are medical, psychological, and therapeutic costs.  Removing these costs from the cost analysis does not mean they are free – it means they are not available or accessible or not provided.  Of the many, many studies that have been done this issue of not including medical costs is a problem.  What is interesting though is that the studies that have been conducted in the UK are more accurate – different funding and different agendas.  The UK studies have consistently found that dispersed community services are more expensive than institutional services.

Another interesting issue is “quality of care” and “quality of life”.  The Arc and other DD Advocates do not look at issues that are outside the personal outcome measures, such as choice and community involvement.  They are missing a huge part of “quality of care” issues by their narrow focus and do not realize that “quality of care” influences “quality of life”.

Quality of care (health and safety outcomes) can be measured objectively where as “quality of life” is more subjective.  We meed to include measurements of quality of care into our assessments and cost analysis.  Below are some examples of areas needing evaluation.

a..  access to comprehensive health care services (primary, psychiatric and dental care as well as ancillary services, including care coordination)
b.  rates and status of abuse/neglect reports and investigations (including victimization in the community)
c.  mortality review
d.  access and utilization of behavioral services and
e.  similar direct measures.

When people who require complex care from a variety of professional services receive all their care in a “medical home” model, such as the ICF/ID, dispersing these people  will make access to healthcare, therapies, nursing, recreation and more unavailable. It is well documented that people with ID have higher rates of chronic medical and psychiatric illness than the general population.   It is also well documented that people with ID have an increased incidence of medical illnesses and have need for comprehensive, coordinated medical services. (Kaye McGivney, 2008)  For the best care it is critical to maintain the same providers over time and to avoid disruption of services. (Kaye McGivney, 2008) No longer will services be accessible or able to be shared.    This means that either the cost of care will greatly increase or that the person will not receive care.

Research also shows that those with DD, when admitted to the hospital, stay longer than those without a developmental disability.  People with DD are also less likely to be discharged to their pre-hospitalization living arrangement due to the fact that the needed supports were not accessible.  This fact highlights the importance of having specialized residential centers (ICF/IDs) to help alleviate the cost of care, crisis care and hospitalizations.  Having such centers increases stability is cost effective and provides stability to the citizens.  (Haier Saied, 2003)

Developmental Disabilities are not only experienced by the person but by the family.  We need to look at not only individual quality of life but the families’ experience and quality of life too. (Colvin, 2006) It is critical to the health and safety of our most vulnerable citizens and  a responsibility of our communities and government to realize that we need supportive communities such as the ICF/ID to best care for some of our citizens in the most cost effective, stable, reliable and safe method.

To do otherwise, is negligent.

Works Cited

Colvin, A. D. (2006). Variables Influencing Family Members’ Decisions Regarding Continued Placement of Family Members with Mental Disabilties in One State Operated Institution.

Haider Saeed, H. O.-J. (2003). Length of Stay for Psychiatric Inpatient Services: A Comparison of Admissions of People with and without Developmental Disabilities. The Journal of Behavioral Health Services & Research, 30(4), 406-417.

Kaye McGinty, R. W. (2008). Patient and Family Advocacy: Working with Individuals with Comorbid Mental Illness and Developmental Disabilities and their Families. Psychiatric Quarterly, 193-203.

 

DDD Costs of Care and Decisions which cost lives

Some decisions have been made which have cost people their lives – I’m hoping that before anymore lives are lost or hurt, our legislators will be given accurate data upon which to base their decisions.

This has not happened in the past due to ideology gone awry.  The cost reports for the care for our citizens with developmental disabilities has been falsified and reported inaccurately.  As a start to this, I have prepared the attached letter – it has a few charts and examples of where this reporting has really missed capturing the costs of care for some of our citizens with the highest acuities who chose to live in small community homes.  Remember, this is not the choice for everyone.

The RHC is the most COST EFFECTIVE environment of care for our citizens with the highest acuity.  Why, in times of budget crisis would people allow these misleading cost reports to guide them is beyond me – not only are we ending up spending more for less care but fewer and fewer people will be able to receive care too.

Please read the letter -  Comprehensive Cost comparison

Imprisonment for people, death to some – It’s coming down to that –

Our state is in a crisis – that’s not news to anyone.  Some of the crisis is self-made from some “advocates” who have pushed inaccurate information to our legislators.  The false information and reports based on inaccurate data were utilized in decision making – decisions that are now coming back to bite us.

There are some solutions but people will have to acknowlegde some mistakes that were made.  Here is just one solution – retention of Direct Support Staff -

We need to think of Quality of Life for our citizens with developmental disabilties.  Having staff turnover rates up up to 44% is not only disturbing but dangerous and expensive.  Do you know that if we changed and tweeked the system just a little, we could save over $28,000,000 and improve the quality of life not only for residents but also for caregivers?

Do you know that moving some residents to small community homes will be imprisonment for them?  Without staff to care for them or staff to take them to appointments and community outings, they will be imprisoned in their homes – is this the type of life that you would wish on anyone?

One can clearly see there is a huge problem: Not even taking into account the effect on residents and the loss of knowledge and skills in relating to residents when staff leave, the lack of continuity in care (all which add to stress and increased behavior issues in residents), all the other issues with staff turnover that are seen in the business world are seen here too.

On average it is concluded that it costs about the annual salary of the person to replace that person – so given that, how much money could be saved in retention of staff (increased wages would help and would clearly offset the cost of staff turnover) which would then improve the quality of life.

Group Home Direct Care Staff make roughly $10.00/hour (some more, some less range is $8.55 – 13.62 in 2010) so that calculates out to about $20,000 for each person – so for 2010 in group homes that comes to $2,100,000 dollars on just staff turnover!!!!

Supported Living is $28,900,000

Now those are some ridiculous numbers – One of the keys to this problem is to look at staffing and how to retain the staff – This is what will not only save money but  improve the quality of life for EVERYONE!!!

Now is the time to think about new systems  – think outside the box (sorry for the cliche)

 The data for this chart was obtained from the DDD Residential Programs Staffing Wage & Turnover Study, years 2008, 2009 and 2010

Type of Program 2008 2009 2010
Group Home 48.1 44.3 39.2
Supported Living 44.7 37.8 35.8
SOLA 18.9 14.9 14.4

Hidden Costs, Access to Health Care, What are we to do?

I have attached two essays which help explain part of the problem of access to healthcare and hidden costs when people and agencies which masquerade as Disability Advocates push for the closure of the Intermediate Care Facility for People with Developmental Disabilities (ICF/DD).  These so-called advocates’ agenda is based on old school ideas and false information for today’s population.  The proposals they have will end up costing more, reducing services all around and hurting everyone.

 

Now is the time for some new thoughts and actions – please read the attached and post comments.

 

Thank you – Cheryl

Medical Home Essay

Hidden Costs of care

 

Manic Psychosis tape

We hear so much about people with developmental disabilities.  Many advocates take family members to Olympia to meet our legislators.  There are many of us who have family members who are not able to go to Olympia to advocate for themselves.  I have been asked, if Fircrest is so great, why don’t we see residents down in Olympia?  This question was asked of me by one of the executive directors of a chapter of The Arc in our state.  Obviously she is unaware of the issues which most of our family members whose home is in an ICF/DD face everyday in their lives.

For an example, I am publishing this audio of my son.  What you will hear was very typical for every day in our house and would go on for hours and days.  Maybe after listening to this, that particular Arc executive will understand why ICF/DD residents are not able to advocate for themselves.

This is my reality.  Sound quality not the best (sorry) and audio starts at 1 minute

Formation of Washington State Task Force to Look at DDD Services

Attached below is my letter to Don Clintsman, Assistant Director, Division of Developmental Disabilities.  He had responded to a letter which I had written to MaryAnne Lindeblad, Assistant Secretary, Aging and Disabilities Service Administration, inquiring about the formation of the Task Force and the importance for a balanced perspective of the participants.

Dear Mr. Clintsman,

 

Thank you for responding to my letter to Ms. Lindebland.  It is hopeful to hear that the The Department of Social and Health Services and the Department of Developmental Disabilities finally understand the concept of and have adopted the term “continuum of care.”

 

We, as grassroots disability advocates have always stressed the importance of the continuum of care, realizing that each person needs to be looked at individually and their needs met according to their assessed support needs.  The only way to accomplish this goal and also accomplish it within a reasonable budget is to continue to offer the full continuum of care to all – regardless of their age group.

 

Once one realizes the critical importance of this continuum, I’m hoping that the budget figures and reports will more accurately be reported to reflect the true cost of care – especially for our most vulnerable citizens and those with high acuity levels in several areas. 

 

It has never been disputed that citizens with high acuity can be accommodated in neighborhood communities and it’s wonderful that this arrangement can work for many.  It is neither realistic nor safe to consider this the best option or even a viable option for many of our citizens who currently reside in the state operated residential communities or those who have requested admittance but have been denied access to these communities. 

 

Given the many constraints of resources – not only dollars – but people and housing, it only makes economic sense to utilize the concept of “scale of economies.”  This concept utilizes the fact that being able to serve more people with the same type of support needs and sharing some of those services within a community actually saves dollars.  Within these communities, the residents also receive their comprehensive health care – minimizing many transportation costs, emergency back up costs, and extra personnel costs used to transport residents to other appointments just to highlight a few examples of costs which are often forgotten.   The residents have much better preventative care and follow-up care, are not traumatized by being “taxied” around town for various appointments such as lab draws, xrays, dental exams, eyeglass fittings, etc. 

 

I will highlight one example of a woman in her mid 30’s.  She lives in a supported living arrangement, has cancer and many other health related problems.  She came through the department in which I work to have her port-a-cath changed due to mismanagement and infection.  This is very unusual to need a port-a-cath replaced, particularly if the first one has only been in a short while.   This woman presented in surgery, unaccompanied by a guardian, unable to comprehend all that was going on.  She had missed many of her scheduled doctor’s appointments related to not only her cancer treatment but preventative and follow-up care for other health issues.  It is stories such as this that I see as totally preventable when a person lives in a residential community with comprehensive care.  What budget does the cost of her care due to mismanagement of her health problems get attributed to?  This doesn’t even take into the account the effects of pain and suffering to this woman. 

 

I know from  looking at many sources which DDD and DSHS provide regarding costs of care, services requested and provided and even the cost of care for the 30 highest cost DDD residents  that you provided to me, the figures that have been used for cost comparison are extremely inaccurate with missing costs, cost shifting and data input errors.    Data that was used for these cost comparison reports was taken from reports with many inaccuracies – therefore, the data pulled is essentially useless if getting an accurate assessment of the cost was the goal.   

 

 

In addition to the issues of safety for our residents, we must also look at safety and training for the caregivers.  I will be looking into the L&I cost of “on the job injuries” to caregivers and charting from which type of facility the highest percentages originate from. 

 

Again, hearing that The Department has now adopted and supports a continuum of care, maybe we can really move forward with innovative systems which are cost effective to safely support our most vulnerable citizens. 

 

I will be following up this letter with data which supports the need for a continuum of care.  In addition to having accurate data, it is critical for some very prominent advocacy groups to realize that denying our citizens with the support needs which are available in the residential communities is not only denying these people their human and civil rights but will weaken the whole system by putting an undue financial burden on our state.  These actions which they advocate for will actually minimize the services to many who have less acute support needs.  The dollar can only be stretched so far without something giving.

 

 If one were to follow their example of “everyone needs to live in the community” I’m afraid that we will lose many of our beloved family members. 

 

Again, thank you for your follow-up letter and I will be communicating with the Task Force Members often once the committee has been decided.

What’s the Better Deal?

A Father Speaks

Who are the experts with regards to disability advocacy?  I believe the experts are the people who are involved with, love and care for our most vulnerable citizens.  These people are the families and caregivers.  The experts are not the ideologues that sit in offices thinking up ways in which they think our citizens should live.

Here is a letter from one of our experts – a father:

DDD Errors and misinformation

Due to continued reliance on the reports from DDD and DSHS, I am now writing daily reports informing our senators of the flawed data and analysis in the information they are receiving.  If anyone would like sources of the original documents and data, let me know – I have them.

The Olmstead Decision

I realize that our legislators are very busy trying to sort out the facts and many are probably not sleeping very much right now.  I certainly would not want to be in any of their shoes – but they are also not in my shoes nor have many of them lived the life of being a parent of a child with developmental disabilities.  Until you have lived it, it is very, very hard to even imagine what life would be like.  It’s easy to take a glimpse here and there and make assumptions but that cannot be generalized to what the total responsibility of caring for a family member with very intense care needs involves.

Senator Adam Kline is one such person who does not comprehend the intensity of care needs or the issues involved in supporting a continuum of care for our citizens with developmental disabilities.  Senator Kline references studies published by DSHS as reliable sources for cost comparison.  If one were to look at the original source, one would see how flawed these DSHS reports are.  Of course, that takes time and energy and our legislators need to rely on agencies to provide this information.  What do we, as citizens, do when these agencies themselves are part of the problem?

Yes, Senator Kline is correct in saying that this is not all about cost but that we need to address the issue of quality of life and the least restrictive environment.  To me, that is actually the main issue and it is for this reason that I fight so hard to maintain our continuum of care for our most profoundly affected citizens with disabilities.  Yes, there are many of our citizens with developmental disabilities that do much better in residential neighborhood communities – in fact, that is probably the best alternative for most of our citizens.  But, for some, that alternative is as if placing them in isolation, unable to interact with the outside world, at the mercy of a mostly untrained and inexperienced care staff and with little oversight to make sure that our citizens are being treated humanely.  This is the violation of human rights – not what Senator Adam Kline is talking about.

No one is disputing the issue that Senator Kline writes about with regards to “individuals ought not to be institutionalized when their needs for habilitation can be met in a less restrictive alternative.”  What he is really missing though is that for many, our state operated residential centers (RHCs) are the least restrictive alternative.  So it sounds to me as if Senator Kline is encouraging people disobey the US Supreme Court in the Olmstead decision by supporting moving our residents out of their community which is the least restrictive for them into a more restrictive community.

The Olmstead Decision

The Court based its ruling in Olmstead on sections of the ADA and federal regulations that require states to administer their services, programs and activities “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”

Under the Court’s ruling, certain principles have emerged:

  • unjustified institutionalization of people with disabilities is discrimination and violates the ADA;
  • states are required to provide community-based services for persons with disabilities otherwise entitled to institutional services when the state’s treatment professionals reasonably determine that community placement is appropriate; the person does not oppose such placement; and the placement can reasonably be accommodated, taking into account resources available to the state and the needs of others receiving state-supported disability services;
  • a person cannot be denied community services just to keep an institution at its full capacity; and,
  • there is no requirement under the ADA that community-based services be imposed on people with disabilities who do not desire it.
This is the part that Senator Kline needs to re-read.  He seems to be missing this information when citing the Olmstead Decision.
For more information and letters sent to our Washington State Legislators, they are in the links section.