Save Fircrest – Essential Supports

A bill has been passed to the Senate Floor to vote on closure of Fircrest School – one of our states Residential Habilitation Centers (RHCs).  The RHC houses two critical communities of care – a Skilled Nursing Facility (SNF) and an Intermediate Care Facility (ICF).

It is a fact that there does need to be some capital improvement to the facilities to provide a safe environment for the residents and this is why we support the Fircrest Master Plan Fircrest Master Plan A-2

The campus has been neglected in the capital budgets for years and this is one reason why there is a large dollar sign to this project.  When buildings are neglected, they deteriorate and become unsafe for residents.  This is the situation we face now.

This does not mean that the land should be sold and the residents forced from their homes and community.  It does provide opportunity to change and to make needed improvements and to re-access the needs.

These are the opportunities that we support:

Fircrest Master Plan Alternative A-2

Federally Qualified Healthcare Center with oversight provided by the Department of Health for Fircrest residents and adult residents in the state who live with intellectual and developmental disabilities.

Collaboration with the University of Washington, Center on Human Development and Disabilities to provide specialized and comprehensive healthcare to community members.  This collaboration would also provide training for students in the healthcare professions.

Opportunities for improvement are not an option if 2SSB 5594 passes.  This bill seeks to close Fircrest and deny current and future residents access to the necessary supports.

We need to defeat 2SSB 5594 to protect out most vulnerable citizens.  Tell your Senator to Vote NO on 2SSB 5594.

 

Not Just the Next Empty Bed

Recently we moved our son from the intermediate care facility to a home in the community under a supported living arrangement.  It was a difficult decision to make given all the research that I have done regarding care and oversight.  Many people wrote to me telling me of the terrible decision I was making and with horror stories of things that had gone wrong in the community.  I was well aware of many of these issues and still am aware of the lack of choice and quality of care that is offered in many settings.  I am aware of the cost issues and the cost-shifting that occurs making it appear that care in the community setting for those with complex care needs is less than the cost of care in the ICF/ID.

But, there were some circumstances that necessitated this move – a move that we thought we would not be making for a long time – namely that the ICF/ID was not able to provide the prescribed medical and nursing care that my son needed and his health was in danger.  There had been charges of medical/nursing neglect, many medication errors, and other issues related to personal and healthcare concerns.  The ICF/ID healthcare providers refused to follow the prescribed treatments of my son’s medical specialists and I was forbidden to teach nursing or personal care staff how to administer special medications or how to apply his splints correctly.  My hands were tied  due to the inability of the facility to acknowledge problems – not one specific problem but many.  I needed to visit several times a week in order to do his nursing care while at the same time being told that my visits were doing him a disservice.

But, my son had one option in this that most other people do not have – the option of CHOICE.

While on the wait list for the Roads to Community Living grant I was able to try to maintain my son’s health until we were able to choose a home that would work for him.  We had specific criteria – number one being that he needed to remain in our local community, the one in which he grew up and in which the ICF/ID was also in.

Of course, the supported living agency had to choose my son first before he could choose them and that took over a year and probably 8 rejections from local agencies.  When Alpha Supported Living Agency said they could support him, it then took time to hire and train staff and planning for which house would work best for him given the mix of the residents.

One of the major reasons that my son had this choice was due to the fact that he had continued to live in our local community and we involved natural supports to help with his care and community integration. He did not have to take the “next empty bed” as his choice for this move (that was how he got into the ICF/ID to begin with)

We are so thankful for this opportunity and my son’s health has greatly improved since his move and he has blossomed in many other areas too.

It is my assumption that many problems that arise from community residential services is that “the next empty bed” is the only choice available.  This is not a system which supports person-centered choice or real community.

There needs to be changes and more alternatives for true choice – from congregate, campus based care to individual homes – as long as the person is appropriately supported one can have a very meaningful life. Many times this takes much collaboration and team effort and adequate funding to support – but it can be done.

Please check out The Autism Housing Network for and ideas on how to increase choice and alternatives for adults with intellectual disabilities.

Disability Rights Washington has filed a lawsuit against Washington State Department of Social and Health Services and the Washington State Health Care Authority to help speed up transition and provide supports in the community.  My son is a member of this class-action lawsuit although I was not aware of it until it was made public this week.

Letter from DRW to DSHS and HCA

DSHS and HCA response letter

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

 

 

 

 

 

“The Last of the Institutions” Part 8 – Shawn’s Story

I have been following this series by Susannah Frame, Investigator from King 5 News in Seattle.  “The Last of the Institutions – Shawn’s Story:  From life in an institution to a home of his own” aired this past week.

Shawn Fanning – institution to community

Below is one of the comments that I wrote on King 5 comments regarding this story.  I will be following it closely and also writing about my own son’s transition from the same campus community to a home in our community.  Our son’s campus community (the same one that Shawn lived in) is in our community of origin and the same community in which my son has lived his entire life.  His new home is also in “our community” not “The Community” and this is a critical difference that is not often spoken about.  This was a requirement for us in any discussion regarding any move from the campus community.

Shawn is a great young man – I had the pleasure or enjoying his exuberance while volunteering in an art group at Fircrest. My son also lives at Fircrest and will be moving soon to a supported living home next month.

I fully support the RHC communities and am very disheartened by the bad press and inaccurate information that is being said about them. These communities are fully needed – some people may only need a short respite or crisis stay while others may need to live here for a longer time period. Whatever the time period everyone has the choice to leave and live elsewhere at any time. No one is there against their wishes or desires. No one is forced to live there – in fact, in order to be “admitted” families have been through some of the most horrific times of crisis that anyone could imagine. These families are survivors and have managed to advocate for their loved ones to have this care.

Our family will be forever grateful for the care of our son. He has loved living at Fircrest and when we told him that we had a new home for him we were afraid that he may not want to leave. Unlike the stories told, my son has choices – he has an iPad and is able to use it to communicate all sorts of needs and desires – he plans outings and parties and tells people what he wants to buy at the store and where he wants to go. He plans his showers around his daily schedule when he wants, he chooses and plans what he is going to eat, he goes to bed at his bedtime, he gets up early to go to work at his community job and he has a great life. Actually, as his mom, sometimes I think he has too many choices!

What would have happened to Shawn and his family if these resources of Residential Habilitation Centers were not there? I know what would have happened to my son and me.
I would have died and he very well would have too. He had spent several prolonged stays at Seattle Children’s due to mania/psychosis that was out of control. We were told that after his 6th admission he would not be able to be admitted again (this was because it was mental health care – he has a dual diagnosis of a rare neurogenic developmental disability and mental illness). We looked at staffed residential homes – none would have accepted him. We asked to have respite care at Fircrest and then an admission – they were both denied. When we asked what we were supposed to do when he had the next crisis DDA told us that we would have to call the police – that would mean that they would take him to jail. He was 14 at that time. That is not an option and never should have been considered but that is the only option we were given.

There is a lot more to the story after that about what happened but suffice it to say that eventually through various appeals he was finally able to move to Fircrest. I shudder to think of what could have happened if these communities were not there for our families.

Please stop calling these communities “institutions” and bad mouthing the services and the families that use these services. We are advocates for our loved ones and others who may not be able to speak up for themselves.

We need to provide choices – not restrictions

Please view the video which highlights the need for choices and options in our efforts to provide services and appropriate care and homes for those who live with intellectual and developmental disabilities.  This is one example of many that need to be options allowed and promoted.

 

 

The Last of the Institutions – corrections to investigation

Update January 7, 2016 regarding inaccurate data used in the DD Audit by Washington State Auditor – see red notes below

Corrections and clarifications are needed by Susannah Frame from King 5 News regarding her “investigative” series “The Last of the Institutions.

Ms. Frame and Russ Walker, Executive Producer King 5 Investigators, have both been notified of these issues and have been given more accurate and objective data and research.  Our hope is that they review the information and research they have been provided and produce a more accurate portrayal of the very complex issues involved with the care of our citizens with intellectual and developmental disabilities.

  1. DDA Case Load and Costs Oct 2015 with Explanation – the reporters failed to mention that the costs attributed to the RHCs actually include costs for an average of 65 “community” clients who utilize the RHCs for short term stays, respite care, crisis care and other services.  This link has the explanations as provided by the Communications and Performance Unit Manager at DDA.
  2. These 65 clients are a non-duplicated number each month so in reality there could be 780 community clients who have their care and services billed to the RHC.  When looking at it this way it is clear that the RHC serves those in the community just as much as it serves the permanent residents.
  3. The DD Performance Audit is riddled with inaccurate data and has failed to capture much of the critical information needed to run a real performance audit.  Information about some of the issues can be found on this website under DD Audit.
  4. The DD Audit also uses resources that non-existent.  For instance, the DD Audit states they used the National Core Indicators Consumer Survey for Washington State 2009 -2010.  Washington State did not participate in the Consumer Survey by the National Core Indicators for the years 2009-2010.   Still trying to locate the data and the report the DD Audit team used for their information.
  5. In addition to questionable resources being used, the National Core Indicators are biased in their ability to capture the voice of those with more profound levels IDD and/or pronounced communication impairments. This population is excluded from the survey
  6. The NCI data is not a “national average” as reported by the DD Audit report.  The survey is only an average of the 16 states that voluntarily use the survey.

 

Response from the Human Services Research Institute in answer to my questions about our State Auditor DD Performance Audit which incorrectly referenced the NCI data for their audit.

In the past, WA collected the Adult Consumer Survey data during a time period that crossed over two separate NCI collection years – between Jan 2007 and Dec 2008.  (see below email from Lisa Weber, PhD) 

Because of this, the data could not be included in the national averages for the year 2009-10.  WA was issued a separate state report on these data (see attached.).

However, these data were included in the chart generator for the 09-10, but are NOT included in the NCI average on the chart generator for that year.  When you look at the data on the chart generator from 09-10 for Washington, please keep in mind the circumstances described above (especially if when comparing to the NCI average.)

Your question brought to my attention that this information should be noted in the chart generator for WA for that year.  I will work on getting that info added.

Referenced email from Lisa Weber, PhD (Washington State):

The attached file contains our data from the NCI Consumer Interviews.  There were 545 adults who participated in a Consumer Interview.  The interview responses and feedback forms are store in separate Access databases.

We have a two year data collection cycle, so this data was gathered between Jan 2007 -Dec 2008.  It was all gathered using the old version of the interview form.  We modified the data entry forms a bit to cover our additional questions and to make the data entry easier for our quality assurance staff, but the numbering of the NCI items in the tables has been left intact. 

Please write to Susannah Frame at sframe@king5.com and rwalker@king5.com to express concerns regarding the lack of objective reporting in this investigative series.

The last of the Institutions – Part 5

Unfortunately, once again, Susannah Frame has mislead people in this “investigation” series on King 5 in Seattle.  There is much to clarify in this recent segment which aired December 8, 2015.

Myth 1

“Only a handful of states operate more institutions for people with developmental disabilities than Washington. And in Washington, more people live in these segregated settings than most of the rest of the country”

Fact of the matter:ICF ID Table 2013

The above table is only the STATE Operated ICF/ID’s

26 states have fewer State operated ICF/ID s for a total of 25 facilities which are home to 11, 294 people (Average per facility – 451 people)

24 state have more State operated ICF/IDs  for a total of  828 facilities which are home to 42,553 people (Average per facility – 51 people) –

Hardly what I would call a handful of state (or facilities for that matter!)

 ICF ID Chart by state 2013

Myth 2

“Since the 1970s when the deinstitutionalization trend started, 16 states have closed all of their institutions that once housed the developmentally disabled, including Oregon, Alaska, and Hawaii. And 21 states, including Idaho, have fewer than 100 residents total living in these types of public facilities”

Nursing Facility and over 16 residents 2013

CMS cost reported by states 2013

The above table is taken from the CMS-64 report.  Again, Susannah Frame is incorrect with her “facts”.  There are only 8 states that have not reported funds for a STATE OPERATED ICF/ID.

It is interesting to note of those states with no costs for a state operated ICF/ID,  6 of those reports costs for private ICF/IDs.  Some of these are quite pricey to the states that have them.

Interesting that only 12 states do not have a large State operated Facility and only 7 states have less than 100 people in these state operated ICF/IDs and Nursing Facilities.

More to come about the private facilities in each state and the funding for both the ICF/IDs and the Home and Community Based Waivers (HCBS).

I believe Ms. Frame and King 5 have some additional investigative work to do.  This is a very sloppy example of research which they are promoting.

Myth 3

According to Mr. Bagenstos, supposedly a “top Department of Justice attorney in the Civil Rights Division” Washington state “remains kind of stubbornly, an outlier”

Look at the tables above and see for yourself.  By the definition that I understand, Washington is CERTAINLY NOT an “outlier.” 

That’s all for today – more myths to be examined from this episode withing the next few days.

Data Retrieved from the following resources:

Medicaid Expenditures for Long-Term. (n.d.). Retrieved from http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/downloads/ltss-expenditures-fy2013.pdf

(2013). Residential Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through Fiscal Year 2011 (2013). National Association of State Directors of Developmental Disabilities Services (NASDDDS), Human Services Research Institute (HSRI), Association of Professional Developmental Disabilities Administrators (APPDA). University of Minnesota.

United States Census Bureau – Population Estimates – National Totals 2014. (2014). Retrieved from https://www.census.gov/popest/data/national/totals/2014/index.html

Univesity of Colorado Department of Psychiatry. (2015). The State of the States in Developmental Disabilities. Retrieved from http://www.stateofthestates.org/index.php/intellectualdevelopmental-disabilities/state-profiles

 

The Olmstead Decisions is Misinterpreted