Better and cheaper?

There has been an ongoing investigative series entitled “The Last of the Institutions” on King 5 News by reporter Susannah Frame in Seattle, WA.

As an advocate for choice and appropriate supports for people with intellectual and developmental disabilities I have been greatly troubled by the continued misinformation that was presented in what I consider to be extremely biased reporting.  When I first learned of this investigative series I was hopeful that some of the myths that have morphed into “facts” would be proven wrong.  Ms. Frame was provided with much factual information from reliable sources but she chose to ignore them and continue to fortify the myths with more of the same misleading and incomplete information which has been the basis of this argument for many years.

During the past 6 months time that the series has aired I have had the opportunity to move my son from the RHC to a supported living home.  Also interesting to note the reasons cited on both “sides” of the issue were the opposite reasons of why we made this decision.  During this transition I have also verified that the cost of care for those with high support needs is as much or more in a community setting than in the RHC – but the costs are hidden due to various budgets providing different supports.

We did not move our son due to being segregated at the RHC.  In fact, he is so well connected in the community that whenever he goes out he runs into people he knows.  He has a supported employment job at a local hardware/garden store 2 hours each weekday morning and is a frequent shopper at the nearby grocery stores.  He is a frequent participant in any local music or community event and has attended weekly mass at the same church he has gone to his whole life. He sees many of his student peers from his high school in the community as they get jobs at various local restaurants and other stores that he regularly frequents.  He was far from segregated!

In addition to the community at large, he loved his campus community.  There was always a new person to say “hi” to and get to know what country they were from.  He loved memorizing people’s schedules and asking them what they are doing.  This constant interaction with others coming and going is something that he will miss moving from a campus community.

But, contrary to what we hear about comprehensive care at the RHC we did not experience this for his care.  The “team” did not include us (parent/guardian) in discussions about care and they refused to listen to us about our concerns.  We were constantly trying to work collaboratively but continually being denied the opportunity to do so.  We were even denied multiple requests by us to teach the nursing team and personal care staff how to appropriately do some of his care treatments being told that we are not allowed to teach them.  At one point the superintendent told us that there are “team decisions and then there are medical decisions” meaning that they saw no need to include us or listen to us about medical/nursing concerns.

It was ultimately this refusal of the medical/nursing team and their sub-standard care that led us to seek an alternative.  Given how the system works the MD who is at the RHC needs to write all the orders for the nurses to be able to give the medication or treatment.  The recommendations by my son’s medical specialists in several specialties were not followed by the MD (although no discussion or conversation occurred to inform us that the specialists recommendations were not going to be followed) at the RHC and therefore my son was denied the prescribed treatments.  This led to many problems and issues of neglect of care for which he will have life long complications.     The community standard of care was not maintained (at least in our experience) by the medical/nursing team at the RHC.

So it was in search of quality medical/nursing care with providers who would work with us that  led us to seek a different setting for our son to live in.  It took over a year to find an agency that could accommodate his needs and also a home that is in our community but we succeeded and he moved in the middle of March to his new home.

We just received the notice from the Developmental Disabilities Administration regarding the cost of care (from their budget) for our son.  DDA will pay the agency $418.15 a day and a delegating RN $26.58 a day to provide delegation services.  My son needs to pay his own rent (from his SSI and rent subsidies) and utilities, he will have food stamps to help with the purchase of food and his medications, medical supplies, physician services and other medical costs will be covered by our insurance and Apple Health Care.

So while this may appear less expensive when only looking at the DDA costs, overall it is more expensive for the state when looking at all budgets included in providing care to those with high support needs.

But this daily cost of care is not the whole story either.  The quality of care provided by the Direct Care Staff, Agency RN, Health Care Coordinator, Program manager and others involved in the agency team is far above that we experienced in the RHC.  The continuity of daily staff has already greatly improved his day to day care.  Issues of concern are readily picked up on and taken care of.  The integrity of the program is high and the people we are involved with are conscientious about their jobs.  There is more opportunity for individualized attention and care which helps to promote health and learning.

The policy in the RHC was to rotate staff daily thereby prohibiting any one staff person from being able to see trends that may be occurring and making it very difficult to communicate needs and have follow through. When I had an issue that needed to be corrected the manager denied that there was a problem – if there is no acknowledgement of a problem there could be no solution.  Hence, we had years of the same issues continually repeating themselves with no resolution.

I continue to support the RHCs and campus communities realizing that everyone has different needs and we need to have resources to accommodate all types of people.  The RHC did not work out for us in the long run but it was a lifesaver for several years.  We need to continue to support this option for those who need it and for those who choose it.  If we deny these services we are essentially promoting negligence of care.

“Institutionalization” is not always the wrong answer – it’s often not the first choice or a choice for everyone but it is the right choice for some and we need to honor that.

Last of the Institution Series letters to S. Frame






3 comments on “Better and cheaper?

  1. Saskia Davis says:

    I feel the need to add my experience to yours, Cheryl, with regard to medical and nursing care. As you know, I ‘m concerned about the difficulties you’ve encountered with regard to medical /nursing care. There are certain things that one should be able to depend on that have not been so in your and your son’s case. In the distant past, I experienced pieces of what drove you to move him. Having had those experiences, I find your complaints credible. But for me and my sister, for whom I serve as guardian, those issues were resolved.

    It sounds to me as if you have been dealing with some people who are inappropriately defensive about some mistakes they have made or have been responsible for. That, of course, is unacceptable. I don’t blame you for having sought and found placement that promises not to be so frustrating.

    Unfortunately, such circumstances occur outside of RHCs, as well. While that is true, it does not lessen my intention to take whatever measures are available to help ensure that the kinds of problems you have spotlighted get resolved systemically so that medical and nursing care are as dependable for everyone as they are for most other of the facility’s residents.

    For a great many, tRHC medical care has been nothing short of miraculous in terms of residents’ transformation from unstable to medically, psychiatrically and behaviorally stable. It’s been a few years, but I’ve seen statistics showing that RHC residents live longer due to the excellent health care they receive. What has inspired me to respond to your writing, here, is that I don’t want your readers to judge RHCs’ medical and nursing care by your experience alone.

    Thanks, Cheryl, for being such a proactive advocate. Everyone benefits!


  2. Thank you, Saskia for your reply.

    It is only with talking about the issues and problems and being aware of them that they can be resolved. This is the reason that I am coming forward with the problems that we have encountered the past 5 years at the RHC. I understand that many do not want information such as this shared out of fear but that fear is causing services and quality of care to disintegrate. As advocates, it is our responsibility to speak up – even if we are afraid.

    You are correct in stating that these circumstances occur outside the RHC as well. The difference is that there are professional peer reviews and opportunities for second opinions which are not options in the RHC. One tends to know who the MD or nurse is that is providing care outside of the RHC and has the opportunity to actually speak and interact with that provider. Again, these are generally not options for those in the RHC.

    Finding that an investigation done by the State Investigative Unit would not even address the issues of neglect with nursing and medical care for a suspected fracture (which was verified later by xray) was more than disturbing. If the investigation of allegations of neglect totally ignores the fact that an injury was not taken care of properly and the lack of care was clearly evident – what good is that investigation? Just an exercise in paperwork?


    • Saskia Davis says:

      Cheryl, I have not in any way implied that your complaints should be swept under the rug for the sake of image. I know that you know that I agree they are well founded and am working with you, not against you, to help assure that systems are changed to make sure such things do not happen to others.

      At Least As Important, however, is that your experience not taint all the other, quite excellent medical and nursing care that is also provided there.

      By my nursing standards, your son’s fracture was mishandled. Unfortunately, I could cite another mishandling that occurred in a community-at-large home, which resulted in the resident’s death. My point is that mishandling is not confined to RHC medical/nursing care. Luckily, your son had you, his extremely proactive and savvy Mom to assure that he got the xray he needed; but mishandling should not have occurred in either venue.

      At the risk of repeating myself, I believe you have been dealing with some very defensive personalities and that defensiveness has compounded, rather than remedied, the problems to which you are reacting. That is not an excuse, but it should serve as a parenthesis so that the entire facility does not have to be painted with the same brush.

      I agree that better oversight is needed so that defensiveness does not dictate poor outcomes in any cases where it is operative. I also agree that peer review is important and should be implemented.

      I disagree that second opinions are not available. When they were needed, I always have been able to obtain outside consultation for my sister.

      I also disagree that knowing who the MD or nurse is who is providing care is not an option in an RHC. I have always known or been able to ask and be told. I did change doctors after one physician made herself unavailable, and, sometimes, I have had to be creative to have the conversation I needed to have with her replacement, so I have had occasions to share your frustration about physician access. Still, 99% of the time, despite the serious complexity of my sister’s medical management, my experience has been positive and her resulting care has been thorough and conscientious.

      Ongoing appreciation. You are a terrific advocate and Mom.


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