Face the facts

Knowing that more budget cuts are coming down the line it is really time for our legislators and advocates to face the facts.  We’ve listened to the rhetoric long enough and many have come to believe what they have heard –  – but the truth has been misinterpreted too long.

When looking at costs for those with intense support needs we need to look at the costs for that population – not the average of the whole.  These costs are dramatically different.  We can all figure out very easily that when people share costs, the individual costs decrease – this is very simple to understand.  Yet, when we are talking about sharing costs for those with developmental disabilities, this simple fact is totally ignored.

I do not hear any advocates saying that someone is “too disabled” to live in the community and I also do not hear the cost of those with intense support needs who choose to live in a community setting.  So-called advocates do not want this talked about but a few of them have slipped out what their sons and daughters have cost our state to allow them the choice of community homes. Everyone should have the choice but also let’s be honest with what these choices cost – not only to the state but the individual themselves, their families and the local cities and communities.

1.  One young man was able to live in the community with the help of 19 hours of nursing care a day for 17 years.  His situation is talked about frequently to illustrate that those with high medical support needs can live in the community but the fact of his state funded 1:1 nursing care is never mentioned.

2.  One young woman lived in a group home for a couple of years until it closed.  She has lived in the intermediate care facility for about 5 years now and is getting ready to move out to a community home of her own.  Our state has spent over $150,000 sound-proofing and remodeling this home that she will live in by herself – and two staff people 24 hours a day.  She will have a male and a female staff person each of the 3 shifts 24 hours a day every day of the year.  Her staffing costs alone will be over $265,000 a year.  This does not include any other costs for her care in the community.

I understand these are two extreme examples but they are real examples of the level of care that those who live in the intermediate care facility could require if they chose to live in a community setting.  When we are talking about downsizing the ICFs we need to look realistically at the costs and they will be astronomical if we even consider safe and appropriate care as a human right.

These are the types of costs that we need to look at when hard choices are made regarding state funds for where those funds will be applied.  I will argue that denying those who choose the ICF/ID as their home not only denies that person but costs everyone in our state.  The costs are not only dollar amounts but costs of quality of life – quality of life for the person, their family and our communities.

It’s time to face the facts and get real about the situation.  Let’s stop the pretending – the pretending is certainly not beneficial to those we are trying to help.

Closing Institutions

Many of our supportive communities are being destroyed.  People are being evicted from their homes and dispersed to isolated housing in the name of “inclusion.”  The reason this is happening is because people and agencies are being misguided with inaccurate information, both with regards to costs and with respect to the 1999 US Supreme Court Decision Olmstead.

It is for this reason that I am providing this information in my attempts to clarify what the costs are and what choice means to those of us who care for our loved ones who have  limited abilities to make their own safe choices.

When looking at costs, direct care costs are the most logical cost to compare since this is a cost that is needed in all types of supportive residential settings.  This is the basic cost and the one that is most often reported for the cost of care in community residential settings.  The costs reported for supportive communities (Intermediate Care Facilitates/Intellectual Disabilities (ICF/ID), Nursing Facility/Intellectual Disability (NF/ID) and Residential Habilitation Centers (RHC) ) are generally very comprehensive costs and by the very definition will be more expensive than the direct care costs reported for community settings.  Below are the lists of services that are included in the comprehensive costs for the supportive communities.

Looking at only direct care costs across many residential settings and support needs – there are two very clear facts that can be seen:

1.  The cost of care increases as the support needs for the person increases – those needing more support have a higher cost for direct care.

2.  The Economies of Scale come into play – in supportive communities, even when the support needs are high, the cost of direct care is lower per person, on average, than in isolated homes.

In Washington State, this became especially evident with the closing of Frances Haddon Morgan Center, one of our state’s RHCs.  In addition to looking at the Economies of Scale in action with the downsizing and closure of one of our RHCS, we were also able to obtain the average daily cost of care for community residents with the highest support needs. The chart below illustrates that as the size of community decreases, the average cost per resident for care increases.

economies of scale

2010 direct care costs

2011 direct care costs

2012 direct care costs

The cost difference between 49 residents and 9 residents for Frances Haddon Morgan Center is astounding.  Moving these residents from their homes proved disastrous for several of these residents, death to one, hospitalizations and crisis to others – all for what was assumed to be a cost saving measure.  This experiment failed on many levels.  It’s time to actually look at the real data, understand what the data represents and move forward.

cost centers 1 cost cetners 2

Fact or Fiction Part 2

cost center

“Average” Daily Rates in Washington State for residents with Developmental

Disabilities who live in 4 types of Supportive Residential Care

Regarding the cost of care, it is clear that the comprehensive cost of the care of those with the highest support needs who choose the RHC is the most cost effective care.  As revealed in the report “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” (2011) residents in RHCs had significantly higher support needs than community residents.  The RHC residents were also significantly more likely to meet both extensive behavior and extensive medical support needs than residents in community residential programs.  “Our current findings suggest very clear difference in medical support needs, with those in RHCs being more likely to have high medical support needs than those in community residential programs.” (Barbara A. Lucenko, PhD and Lijann He, PhD, 2011)

 

This report also examined the DDD Acuity Scales and found that the residents in the RHCs also  had significantly higher support needs in interpersonal support, protective supervision and Activities of Daily Living (personal care, dressing, bathing, eating) in addition to medical and behavioral support needs. 

 

 

Looking at the daily cost of care in each cost center, it is also clear that there is much cost shifting in some areas which make it appear that the cost of care is less expensive.  This is the information that is often not shared when comparing costs.  It is also critical to look at the support needs of the residents in each setting, realizing that those in the RHC have significantly higher support needs and inherently higher costs related to the higher support need.

 

One other area that is misrepresented is that the “community” ICF/IDs offer the very same services as the state run supported communities of the RHCs.  It is clear by auditing their costs that this is not the case.  Knowing the high support need of the average RHC resident, it is very clear that this average RHC resident could not be safely and cost-effectively cared for in the “Community” ICF/ID since the comprehensive services are only available in the RHC. 

Please see this link below for a description of the cost centers and more information on the data 

 Average Daily Cost of Care

Bibliography

Barbara A. Lucenko, PhD and Lijann He, PhD. (2011, February). Assessment Findings for Person with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings. Retrieved from http://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pdf

In Washington State the term Residential Habilitation Center (RHC) is inclusive of the ICF/ID and the specialized Nursing Facility.  The costs in these reports are only for the ICF/ID part of the RHC.

 

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