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

Children’s Mental Health and Developmental Disabilties

After watching the House Health and Human Services Appropriations and Oversight Committee Work Session from December 1, 2011, I really saw that the mental health folks are much more aware of the cross systems issues and the problem with “silos” that the DD folks seem to be unaware of.  DDD really needs to look again at the services that their clients receive and share accurate data.  The data they share is so full of inaccuracies that those who use DDD and DSHS data as their facts (The Arc Chapters) are only hurting the very people who they are advocating for.

 

This is clear by the crisis that we have dug ourselves into.  There was NO cost savings from closing Frances Haddon Morgan Center as many were led to believe.  Now instead of using that “savings” for more in the community setting, those who are in the “community” settings are going to lose even more – This treatment is inhumane and is done by the very agency that is set up to protect our most vulnerable.

 

I wish that members of the The Arc chapters would look at some of the data that I have been able to gather and realize that what DDD is giving them is misinformation.  Rather than censoring me or accusing me of abuse because I have questioned the DDD and DSHS reports, it would benefit all of us if someone would actually look at this data and realize that what I have is critical information.

 

The fact that my questions to the authors of some of these reports and the administrators in DSHS and DDD are not answered  should be a big clue that there is information there that they do not want to acknowledge – I would assume because it would show that they are not being truthful in their approaches to policy.  If they were , I believe they would gladly answer my questions or at least tell me that I’m wrong.  I’ve not heard that I’m wrong either.

 

If anyone would like that data, I’m more than willing to share.  The more who are aware of this and who understand it, the better for ALL people, with and without developmental disabilities.

 

I will be posting another letter with some very specific questions that DDD and DSHS need to answer.

Resident hours per day charts

 

Thank you,

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.

Special Olympics – Shoreline Stadium

What a great day yesterday – not only did the sun come out but there was a huge turnout of athletes for the Special Olympics Track meet at Shoreline Stadium.

It was great to run into people from all stages of life and events from the past years.  Our kids are growing up, joining different teams and branching out in various programs.  This was one place where you can actually experience the full continuum of needs and abilities of people with developmental disabilities.  It’s also so inspiring to see people of all ages participating in these events.

I came away from the meet very inspired – the joy expressed by the athletes is contagious.  We’re

looking forward to the next meet on May 14.

Thank you!

Thank you, all, for your support and help in making this issue more visible.  Many are unaware of the harm that some advocates are proposing.  You would think that disability advocacy groups would be all over this problem  but in fact, they are a huge part of it.

We have much work to do this week in Olympia and will do our best to make ourselves present and heard.  We’re up against very strong groups who have dominated and bamboozled many over the years.  We are beginning to chip away at that and informing people of the reality of caring for our most vulnerable citizens in the most cost-effective, safe and humane way possible.

Cost Breakdowns for RHCS – Most Cost Effective Care

With all the disastrous budget woes we are currently experiencing, now is not the time to irresponsibly start a social experiment with our most vulnerable citizens.  Looking through the reports for “Money Follows the Person” report for January – June 2010, (Mathematica Reference Number 06352.400)

It is clearly evident that we do not have enough resources for those already in the community – why would anyone even consider moving more people with more complex needs out of their safe, cost effective home?

These are quotes from the MFP report:

 

2/3 states reported difficulty reaching transition goals – listed in order of importance

  1. Shortage of affordable and accessible qualified housing
  2. Complex needs of the target population
  3. Transition candidates not choosing to reside in an MFP-qualified residence
  4. Family opposition, particularly among candidates with developmental disabilities.
  5. Shortage of slots in their HCBS waivers
  6. Contracting delays
  7. Cuts in the state budget
  8. Inadequate service capacity
  9. Lack of caregiver supports
  10. Staff turnover

 

Rates of reinstitutionalization : most common factors are:

l. lack of informal supports in the community

2. Lack of formal paid service or supports in the community

 

Emergency Calls for backup assistance:

34.9%  of calls were in response to direct service or support workers not showing up as scheduled

2.8%  were to address transportation to get to medical appointments

 

MFP continues to encounter systemic challenges related to state budget cuts, scarce housing options, limits imposed on Medicaid HCBS benefits and shortages of services and providers.

Washington reports that hiring freezes, furloughs and lay-offs have strained available staff resources and in some cases limited the MFP program’s ability to make timely transitions, conduct trainings, or perform outreach.

 

Given this very dismal picture of what life in the “community” is like – how could anyone advocate to move a person from their safe home into these unchartered waters?

The charts below indicate the actual cost to our state for the care in our RHCs.  This is the cost for comprehensive care with trained, stable staff.  This is what we need to maintain and expand on to keep our most vulnerable and challenging citizens safe and healthy in addition to sharing these services with those who already reside in another community setting.

 

 

 

 

 

How Can This Happen? DDD denies admission to RHCs

If this has happened to you or you know of someone who asked for or desired admission to one of our RHCS – PLEASE have them contact me.  We are trying to inform our legislature about the misleading information that DSHS, DDD, the DDC and The Arc advocacy groups among others are sending.  People do want our RHCs but the legislature is not hearing them – we need to change that!

Is there a monopoly on disability advocacy?

I’m outraged at the inhumane treatment that our most vulnerable citizens are receiving at the hands of some advocacy agencies and departments that are set up to protect these very citizens.  Not only is this segment of this population that is being ignored, their advocates that can speak for them are being banished from public discussions and stakeholder meetings.

There is a very active grassroots advocacy movement which  supports our most vulnerable citizens.  These people are dedicated beyond imagination, energetic, creative and innovative.  They have come up with many alternatives that will not only save money but enable more people to be served.  They want to share resources and expertise but their hands are tied by the monopoly that runs disability advocacy.

There is so much senseless nonsense being passed off as fact, yet if anyone questions it or asks for clarification, you are shunned.

I got a note from an executive director today in response to a question I had as to why I couldn’t comment on the public site.

This is his response:

Anyone is free to submit an article for consideration.  Articles we publish must be consistent with the values of the DD Act, namely self-determination, productivity, independence and integration/inclusion in all facets of community life.

We decided to have this blog under some editorial supervision because there is a lot of mis-information in the DD community which would not be helpful.  We hope to provide/publish information people can trust.

My response to him:

That is exactly my concern about this blog.  I believe that it is very biased in favor of those who can be self-advocates but does not address the needs of those who are not able to function at that level.

Within the population of people with developmental disabilities, there is a wide continuum of abilities.  Many of these people are not able to be their own self-advocates and where do these people fit into the scheme of this?  Many are in the community, many live in RHCs, but they are still people and their voices need to be heard.

When articles are written only from the perspective of people who can be self-advocates and what they are able to do and accomplish (I fully support them by the way) it really hurts the people who are not able to.  Also the family members of these people are made to feel like they are not the best advocates for their loved ones, that some agency “knows” better than the family.

These are my concerns and I don’t see how they can be addressed with out allowing something to be written with regards to them.

I fully believe that many of these agencies are good and do much great work but I also know that most do not advocate for the needs of my son and others like him.

How can we break down these walls and have a real discussion rather than being banished just like they are banishing our loved ones?