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.
If the health and welfare of our most vulnerable citizens was not at stake over these issues, I would actually find the petty and childish behavior of the “Advocates” funny. Who are these people and what is their agenda? I’d really like to know because they certainly to not advocate for the same people that I and other people in grass roots groups do.
Are they afraid of people questioning them and possibly finding out the mismanagement of our public funds that has cost us MILLIONS?
1. They are not “Advocates” for our most vulnerable citizens – in fact, they are quite the opposite. Hearing the cheers and congratulations for closures of our RHCS, a move which is devastating for many, by these people and their pawns, only solidifies the fact that they do not advocate for all.
2. They are not interested in any information that is brought up that indicates extreme mismanagement of our public funds by DSHS. If you look at the Washington State Auditors website and read the reports you will be astounded by the lack of oversight with our public money in the hands of DSHS.
3. If this mismanagement was even slightly corrected, there would be millions of dollars saved which could then be put towards real care of our citizens.
4. They are advocating for expensive social experiments to be done with the lives of our most vulnerable citizens – they want to forge ahead with their blinders on regarding true costs – both in dollars and in peoples’ lives.
5. Assessments and Quality Assurance surveys that have been mandated by law have not been completed or analyzed. Regardless of this fact, these programs are considered “successful” – by what standards?
6. One success story that was presented to the public is about an autistic man. He lived in an RHC for many years and finally was becoming stable. It was decided to transition this man to a “community” setting – this process took 2 years and many, many hours of intense 1:1 and sometimes 2:1 assistance and behavior support. He did move to a home and a new job (doing the same sorting type of job but rather than in a sheltered workshop he was now supported in a factory). Their story ended here -SUCCESS? – well what they didn’t tell us was that this man only lasted a few months in the job at the factory. Something happened – we don’t know what but he’s back to square one, more intsensive supports and searching for another job. I don’t call this success – I call this a social experiment with this man’s life.
He was fine and his behavior was controlled and he had a job – I can’t imagine what this experiment, which DDD, DSHS, The Arc and other agencies call a success cost our citizens.
This is social experimentation done to our most vulnerable citizens? Did this man have a choice?
They consistently remove posts from public social network sites of any posting that might question their platform.
I have too many of my deleted and censored posts to keep track of them. I will post links to some of the more recent ones that have been removed.
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
- Shortage of affordable and accessible qualified housing
- Complex needs of the target population
- Transition candidates not choosing to reside in an MFP-qualified residence
- Family opposition, particularly among candidates with developmental disabilities.
- Shortage of slots in their HCBS waivers
- Contracting delays
- Cuts in the state budget
- Inadequate service capacity
- Lack of caregiver supports
- 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.
Once again there appears to be censorship, shunning and dismissal of the concerns of some advocates. We have had discussions regarding these issues previously. In light of or our current budget crises and the attempts to serve the most people with fewer dollars, I would think that it would be critical to listen to those who might have innovative and constructive ideas. What is happening though is shutting down any discussions that do not parallel the “mission” of The Arc.
I have raised several questions which continued to go ignored and unanswered. The newest issue is that my comments will not be posted on The Blog from The Arc of King County. Even though my comments are from the perspective of an advocate for a child with profound disabilities, which according to your mission, you support, I am not allowed to question or share concerns.
What is interesting about this is that The Arc of the United States posts my comments and appreciates the ability to discuss issues. They, also, state they follow the mission, but are not hiding behind it afraid to confront tough issues. Does The Arc of King County not share this same philosophy?
I can also tell you that I have uncovered so many flaws, false representations regarding costs and acuities, quality assurance problems that are being covered up and sugar coated by DSHS, DDC and many of the prominent advocacy groups. I find this deception so irresponsible on their part and am outraged at this. These agencies are reporting to our legislators and public these inaccuracies as fact and any questions to their validity is ignored and banished from discussion.
I would like to think that particularly, now, in this horrible crisis, that it would be time to break down these walls and listen to the people who advocate for those who can not speak and be their own advocates. There are so many viable options that are not even heard due to this line in the sand propagated by those who are supposed to be advocating for them. Instead, these groups are advocating for the demise of a system and community that has saved lives.
Not only will the process that is being promoted by DSHS, DDC and The Arc, destroy a system that can work (needs some tweaks for sure) but in the process will also hurt ALL people with disabilities due to the agenda that is being followed without question. This is what I, personally, find so despicable about disability advocacy by those who run the monopoly.
Many of the assessments for our residents are based on acuity. Acuity means need. High acuity means that the person requires much assistance in order to accomplish the task. The areas that are measured in acuity are listed below with some examples for each measure.
Activities of Daily Living – dressing, eating, bathing, every day tasks that many of us take for granted.
Interpersonal Support – support needed to interact with community members, friends, family and other people in general
Medical – suctioning, dialysis, inhalation or oxygen therapy
Mobility – ambulating or moving about, positioning
Behavior – self-injury, injury to others, wandering, sexual aggression – Behavior acuity based on frequency, severity and assistance provided.
Protective Supervision – level of monitoring required during awake hours
Generally, the higher the acuity, the higher the cost of care. This care is necessary in order to keep our citizens safe and healthy – there are no substitutes for or shortcuts to adequate and appropriate personal care.