Fallout: Loss of jobs and hours in Seattle

Social Justice Activists in the Seattle Commission for People with Disabilities are showing how little they understand about the lives and choices of people with complex and profound intellectual and developmental disabilities.  With no planning in regards to transition for employees, employers, vocational training and job development, this commission has pushed for the rapid elimination of certificates which allow special wages for a certain population.

Seattle Commission for People with Disabilities

Councilmember Teresa Mosqueda and members of Seattle Commission for People with Disabilities

Specific employers to pay specific employees a specific wage for a specific job

These certificates are not a “catch-all” loop-hole to allow employers to pay any person with a disability less than the minimum wage.  The commission leads people and legislators to believe that these certificates are easy to get and allow employers to exploit their employees.  ACTIVISTS – PLEASE GET YOUR FACTS STRAIGHT

There is no “loop-hole” and there is no exploitation.  There is choice and alternatives that are based on an individual’s person-centered planning. These activists have literally pulled the rug out from under those who were employed with this certificate and those in the future who would have benefitted from this choice.  It is no longer available and there are no substitutes.

The people affected by this new law were working in integrated, community settings.  These jobs were a route to inclusion and community.  This is what people with disabilities and their advocates have been wanting.  Things were working well for the employee with a disability, the employer, the community and the family/caregivers of the employees.

That is until the Commission threw a monkey wrench into the lives of people they do not know or understand.  The Commission has greatly misinterpreted research on the issue, misinterprets the law behind the certificates and how they are used and totally disregards the choices of those most affected.  The Commission has led community members and our City Council to believe these employees are exploited and has twisted the truth to outright lied about the situation in order to push his personal agenda.

Contrary to what the Commission claims,  there were many concerns voiced by people with disabilities and disability advocates against the elimination of the special certificates.  Unfortunately, the Commission does not think that these people have the right to voice an opinion and so discounts them.

What happened to “nothing about us, without us?”


There is inaccurate information regarding the sub-minimum wage laws and certificates, false information regarding the laws and actions in other states regarding sub-minimum wage and employment trends for people with intellectual disabilities.

SubminimumWageLetter from PWD commission


Social Justice?  Making people with disabilities unemployable in Seattle

Sub-minimum wage – godsend or exploitation?

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 – 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



Shame on Frame – King 5 “Investigative” report

Susannah Frame is doing a great disservice to our community. Her total lack of appreciation for the diversity of our population of citizens with intellectual and developmental disabilities is more than problematic.   Without an understanding of this diversity one cannot even begin to understand the complexities involved in the care of our community members.  Below are some bullet points that need clarification from Ms. Frame:

  •  mentioned several times about biases in the “scientific studies” but fails to mention what those biases are.
  • refers to cost of care being less expensive in a community setting – but she has not explained what “cost of care” is or how it is measured.
  •  has not shown any indication that the cost of care is higher for those with higher support needs.
  • refers to the families who have had their loved ones in the RHCs for 20-30 years and are afraid – unaware that there are many young people who live in these therapeutic communities and many more who were denied this care.
  •  has not offered any solutions or real alternatives or how those alternatives could be achieved.
  •  seems unaware of the crisis in our community care system with so little oversight that many fear for their health, safety and lives in these community settings.
  •  has not addressed the issue of access to care in the community such as medical care and transportation.
  •  has not spoken with any of the agency service providers in the community about their inability to staff and appropriately care for an influx of people with very high support needs.
  •  has not addressed what a person’s community is and personal choice in making that decision.

If one is going to talk about de-institutionalization without addressing safe and appropriate supports in the community, this type of advocacy endorses neglect and risk for our most vulnerable citizens. The environment that is the Least Restrictive for that Person is the environment which allows that person to interact with and be part of the community to their fullest potential. As stated in the 1999 US Supreme Court Decision of Olmstead, for some that may be the institution.

The issues above need to be addressed and discussed in any conversation dealing with care of our loved ones. The answer is not arguing  “institution vs community” – the answer is to look at  the diversity of the population and understand their needed supports and then how to fund and maintain those supports.

“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.”  John Adams

Cost of Care

Yes, it is absolutely correct that DSHS costs for care in the RHC is greater than DSHS costs for care in a community setting. Looking only through the eyes of DSHS it would make sense to close the RHCs to save DSHS funds – but looking at the big picture of how things work that is exactly the opposite of what one should do if cost was a factor. .

Cost of care is one issue discussed  – but not what “cost of care” means for each setting nor the support needs of the residents in each setting.  The graph below is a good example of missing costs – but necessary costs for care.  Looking at the cost breakdowns for areas of care, it is clear the RHC provides a much more comprehensive package of care than the community settings.   The greatest cost of care in community settings is the personal care cost and for people with higher support needs, that personal care cost is extremely high as evidenced by the data from DDA.

RHC and Community Cost

All of these are included in the RHC Cost

Where are they in Community costs?

Other Costs


Developmental Disabilities Administration. (2012). Cost of Community Clients with High Support Needs.

(2011). RHC Cost Details and Federal Reimbursement – CMS.

Community Cost of Care Reports, Public Disclosure Information Revealed. (n.d.). Retrieved from http://www.becausewecare1.com:https://becausewecare1.com/community-cost-of-care-reports-public-disclosure-information-revealed/

Clintsman, D. L. (2011). Assistant Director, Department of Social and Health Services. 30 Community DDD Residents – highest costing to DDD.

Atkinson, M. (2011). DSHS: Developmental Disabilities Services Overview. Office of Program Research and Senate Committee Services, Joint Legislative Task Force. Retrieved fromhttp://www.leg.wa.gov/JointCommittees/DDSSTF/Documents/Oct2011/DevDisabOverview.pdf

Barbara A. Lucenko, P. a. (2011). Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings. Department of Social and Health Services. Retrieved fromhttp://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pd

Support Intensity Scale. (n.d.). Retrieved from American Association on Intellectual and Developmental Disabilities:http://www.siswebsite.org/cs/SISOnline

Division of Developmental Disabilities: Intake and Determination of Developmental Disabilities. (n.d.). Retrieved from Washington State Legislature: http://apps.leg.wa.gov/WAC/default.aspx?cite=388-823&full=true

(Data taken from Certified Residential Program Costs of Care Reports for 2010. The agencies from which data was retrieved:

Aacres WA, LLC – Tacoma Aacres WA, LLC Abbott House –  Alpha Supported Living – Ambitions of Washington – Region 4 Ambitions of Washington – Region 5-  The Arc of King County – The Arc of Spokane –  Bethesda Lutheran Communities Camelot –  Centerpoint Services –  Community Alternatives for People with Autism –  Community Homes –  Community Integrated Services –  Community Living – Bellevue –  Community Living – Kent/Auburn –  Community Living – Kent Intensive Community Living – Sunnyside –  Community Living – Yakima –  Destiny House –  Educational Programs in Home Living –  Friends of Families –  Friendship House –  Group Action for Peninsula People –  Harbor Alternative Living Assoc. – Inglewood Residential Services –  Integrated Living Services –  Kitsap Residences –  Kitsap Tenant Support Services –  Life Skills Center –  Maksu, Inc –  Premier Care Services –  Provail  – Puget Sound Regional Services –  ResCare –  Shamrock Living Services –  Shared Journeys –  SL Start – Grandview –  SL Start – Seattle –  SL Start – Spokane –  Stand Together Total Living Concepts (2010)


We hear over and over that the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) is an entitlement – but what does this mean in real life?

One would think that if something is an entitlement that it would be there for you when you needed those services   Not so with the ICF/ID and in the state of Washington, the ICF/ID is not available to you if you are 21 or under.

Recently I had a conversation with an executive director of an adult family home which is licensed for adults with developmental disabilities.  In talking about the experience that our family  went through in order to have our son admitted to the ICF/ID for lifesaving care,  this person was horrified.

She had heard that the ICF/ID was an entitlement and was very confused by our story.  She had no idea of the struggles and crises that most families and individuals have survived in order to be lucky enough to utilize this “entitlement.”  She then stated that she needed to hear these stories because she had believed that the ICF/ID was an entitlement not realizing that it is really far from that in real life stories.

Listen to the stories of families who are the survivors.  Of the many, many families that I have had contact with and of the stories I have heard, not one has had the ICF/ID offered to them as an entitlement.

In fact, after a long meeting with my son’s case-manager and the Children’s manager for the Division of Developmental Disabilities to discuss discharge planning from one of his many prolonged hospitalizations, I overheard the DDD manager say “Don’t offer them anything!” as I left the meeting.

What they did offer was for us to call 911 for his next crisis since the Regional Service Network Administrator had indicated that he would not approve another admission for our son since “he was not improving with treatment.” Doesn’t that mean that he needs more help and maybe ought to be able to take advantage of his “entitlement?” DDD didn’t think so.

Obviously with respect to the ICF/ID, the definition of “entitlement” is different and does not mean a guarantee of access to benefits based on established rights. It seems to mean fight until you are almost dead, endure abuse, be jailed, or many other horrible scenarios before you may be “entitled” to access appropriate care in the ICF/ID.

People need to know the stories of our survivors.  Please share yours.


We “institutionalized” our son at age 15

Before you condemn me for this decision and tell me that we could have done something else, I would like you to read my statement below.

Unless you have had a shared experience, you may not understand what families such as our face in trying to manage our kids safely at home with few, if any, adequate supports.  I believe this situation will get worse before it gets better since many will have to experience this to understand the mistakes they have made in advocating for closure of institutions which provide comprehensive and safe care to our most vulnerable citizens.

First, I will make one assumption and then state 2 facts.

Assumption:  we all agree that stability and sustainability are better than chaos and crisis.

Fact 1:  Community Intermediate Care Facilities for people with intellectual disabilities (ICF/ID or ICF/DD)  in Washington state do not have nursing or nurse delegation available for the residents.  This means that for a resident to live there they need to be able to self-administer all their medications.

Fact 2:  Insulin is one of 5 “high risk” medications in a hospital setting.  This means that Register Nurses in a hospital setting need to double check the dosage prior to administering insulin to any patient.  In community homes for people with intellectual disabilities, insulin injections are the only injectable medication that a non-licensed provider with nurse delegation is allowed to give.

I recently attended the 33rd Duncan Seminar at Seattle Children’s in Seattle, WA.  The topic was transitioning our special needs pediatric population into the adult world.  One pediatrician spoke, and though very engaging and informative, he stated “or you could just drop your kid off at Fircrest”.  Fircrest is one of our state’s 4 remaining Residential Habilitation Centers (RHC).

This is my letter to that pediatrician informing him of his error in judgment.

Dear Dr. ______

Thank you for your informative presentation at the Duncan Seminar.  As stated above, I greatly appreciated your information and sense of humor.  There was one comment you made though which I feel I need to address.  You stated “you could just take your kid and drop him off at Fircrest” or something very close to that.

My 18 year old son lives at Fircrest and we didn’t just go and “drop him off” there.  Our son has a genetic (most likely some sort of metabolic neurodegenerative disorder – geneticist and neurologist are still working on it – The Mayo Clinic and Emory Lab see  “something” in his genes but cannot yet pinpoint it) neurodegenerative disorder which causes not only Intellectual Disability but manic and psychotic episodes.  We are very involved in his care and he is very active in community events but Fircrest provides the stability and constant personal interaction which our son requires to maintain his orientation to this world.

We never imagined that we would place our son in any type of residential setting – in fact we even kept him home for birth-three since we didn’t want to “institutionalize” him and separate him from our family.  I believe to this day that it was the close interaction with me and our family in his early years which has helped him tremendously with his social and language skills.  We never thought he would walk or talk.  Actually, sometimes we wish he would now stop talking since it’s literally non-stop but if you ask him to be quiet he yells “I know how to talk!”

When the manic and psychotic episodes started and the crisis cycles started with multiple prolonged hospitalizations we and his care team knew that we needed to find a residential placement for him to keep him safe.  We found that there were no facilities in the area which were adequate – the IPU at Seattle Children’s, though able to work with his mania/psychosis were inadequate in working with his DD issues – even with 1:1 support they did not understand how to manage his personal needs (diapering a 14 year old for instance).  He was admitted to Swedish on the pediatric floor due to complications from dehydration/extreme weight loss from a manic/psychotic episode.  He was still manic with hallucinations and psychosis but also needed additional medical care. We were told to keep him in his room because he was scaring the other kids – this was literally impossible without scaring them more from hearing his screams from being confined.

After his 5th hospitalization in about 1 ½ years he had to be readmitted 3 days after discharge.  We sat in the ER for over 12 hours with the psychiatrist, social worker and nurses from the IPU in addition to the 1:1 security presence, trying to convince the RSN, who is the gatekeeper for hospital psychiatric admissions, to admit our son.  Finally, he was allowed to be readmitted but we were told the RSN would most likely not approve another admission because the treatment plan wasn’t changing and there was nothing else they could do for him.  That was absolutely true but it was the only safe place that we had for him and our family.  At the discharge meeting when I asked what we were supposed to do with the next crisis, the only solution was to call the police and take him to jail.

Our son was 14 at the time, was on a HCBS waiver and we and his treatment team had already requested placement at a group home or Fircrest.  DDD denied all these requests but told us to call the police.  This was a totally unacceptable solution to the issues at hand.  Luckily, we connected with a psychiatrist who understood us and our son.  She worked directly with us in trying to maintain our son at home.  This arrangement was supposed to be temporary while our son was on the “waiting list” for residential placement.  I inquired each month how the process was proceeding and was told “we’re working on it.”

Luckily, or unluckily, I sustained an injury which required surgery from caring for our son.  This then led to multiple life-threatening complications for me, my own cycle of hospitalizations and surgeries which then led to more crises for our son.  After 9 months of this, we found out that DDD had lost our son’s paperwork.  Due to my own health crisis and the deterioration of the rest of our family, we were able, with MUCH added stress and work, to have our son placed at Frances Haddon Morgan Center in Bremerton.

This was the best that DDD could do.  They had stated that our son (while in crisis) would have to go to Yakima first for “respite” then be transferred to FHMC.  We were able to talk them out of the Yakima stay and get him into FHMC.  This move saved his life and mine.  After a year and with many letters explaining the other health issues with me and my other children, we were able to have our son transferred to Fircrest – the RHC he should have gone to from the very beginning given that we live in the U. District and he has lived in North Seattle his whole life and knows Shoreline like the back of his hand.

Since moving to the RHC our son has been stable and has not needed to be hospitalized.  The RHC has the support staff that can provide stability and the constant personal interaction he needs in addition to managing his ADL’s and personal care.  Our son is very happy and loves his home and community.  I know many parents and family members of Fircrest residents who have similar stories and experiences.  The families today who need the services of the RHC are much different than years ago when people were left there and forgotten.  Yes, there are people there who do not have family or friends visit but the with the younger population, this is not the norm anymore.

I know that for our son a group home would not be safe for him.  The rapid staffing turnover and lack of back up for staff leads to safety problems which could be life threatening for our son and others that I know.  I believe that many developmental disability advocates have done a great disservice to our DD population by advocating for closure of institutions.  I wholeheartedly agree that this is not the first option nor is it the most appropriate option for most of the population but for the people who are there, it is the least restrictive and safest choice for them and their families.

Many people fail to understand the issues of dual diagnosis in our DD population.  For our family it was the onset of mania and psychosis from early onset dementia which led to us needing to think about placing our son outside our home.  Mental illness is difficult for those who do not have a developmental disability so just imagine how much more difficult it is to manage in the DD population.

We did not “just take our son to Fircrest and drop him off” because we didn’t want to care for him.  He is there for stability and his health and safety for the health and safety of his family. I think that we would all agree that stability and sustainability are much better than crisis and chaos.

Again, thank you for your presentation.  If you are interested in a tour of Fircrest to see what the institution is like today, I would gladly take you to visit.

Thank you,

Cheryl Felak, RN, BSN

Seattle, WA

Blind Alligiance

I’m not writing this to be negative – I’m writing this to inform people of the planned failure of services that our state and others are utilizing in denying services to our citizens with developmental and intellectual disabilities.

 There are several ways in which our state and others are managing this and unfortunately this is being done by some of the very agencies which state their mission is to support this population and people will believe what they hear.  Another unfortunate issue is that some of these groups monopolize many of the social media groups (http://groups.google.com/group/dd-coalition) and therefore silence anyone who may question some of the tactics or information which is disseminated through these groups.

The “research” that is done by the Department of Social and Health Services and the Division of Developmental Disabilities and written in reports  – particularly the report entitled “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” written by Barbara Lucenko, PhD, http://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pdf is one example of the lack of integrity and accountability in reporting issues.  

 The data was researched in three distinct residential settings: “Residential Habilitation Centers (RHCs)”, “Community Residential” and “other Community Based” and there were statistically significant differences found between all 3 areas in support needs of the residents.  Ms. Lucenko chose to collapse these three categories into two:  “RHC and Community Residential” and “Other Community”.  This decision to manipulate the data invalidated the conclusions she drew yet no one would know unless they read the report or questioned the findings.  When I questioned her findings I was ignored or called “abusive” for questioning.  How can we base policies on actions and decisions such as this? 

If this report was submitted to any academic journal for review it would be ripped apart due to the poor conclusions that are not based on the facts that were documented in the data collection.  Why then, does our state government accept this report blindly?  Is it because the false “Key Findings” were written to support the planned attrition of services to our most vulnerable citizens?  I am not attacking the author here – I’m only informing you of the situation.  As I wrote, I have attempted several times to contact the author through various methods and also DSHS Administrators.  They have chosen to ignore the questions.  Would a person in academic or scientific research choose to ignore questions about their findings?  I think they would choose to answer the questions to verify and prove they were correct in their analysis.  Why then, do we allow our state researchers to make poor conclusions and ignore scrutiny?

I have discovered that reports are handed out by DSHS and DDD with “facts and figures” are accepted by agencies without questioning where they came from or what they represent.  With this blind allegiance to an agency many are being hurt.  With this blind allegiance to the inaccurate and/or incomplete data and information, policies are being made.  

Please, take off the blinders and ask questions!


Yes, in answer to those who accuse me of many horrible things  – I am biased – biased towards safe, quatlity and cost effective care for our citizens with Intellectual Disabilties.  What I find funny in an ironic way is that some of these people accuse me of the exact opposite of what I am doing.  I often wonder where they are getting their information or where they learned their math and logic because they just don’t make sense.

I do not think that people or systems are prepared to care for people with the highest support needs.

I feel like a broken record in trying to communicate and break down walls of those who have been led down the wrong path by brainwashing.  If people would stop, listen and think, I believe that we could come up with a system that really does support a continuum of care – a system which best serves each individual with their assessed support needs in a safe, quality and cost effective manner.  I’m afraid to say though that until the propaganda is questioned enough and people begin to hear other opinions and issues, it may be long haul for us.

I only hope that no more innocent people will lose their lives while we are trying to figure it out.

Cost of Care by Support Needs, nursing and some medical care included

DD EMIS Data for Home and Community Based Service Waivers




What is an Intellectual Disability (ID)

This is a short video put out by The American Association for Intellectual and Developmental Disabilities.  It helps to clarify what these terms mean.   I have tried to communicate for years – IQ cannot be the only determining factor in seeing how a person is able to function.  This multidimensional definition is much more in tune with reality.

The highlights of the information are:

There can be HUGE differences between someone with a developmental disability and one with an intellectual disability – a person with a DD does not necessarily have an ID. I would venture to say that every person who lives in the  Residential Habilitation Center (RHC)  has an ID of significant support needs.

Also with these new definitions they are looking more holistically and in a multidimensional view of human function.

These are:

1. Intellectual

2. Adaptive behavior

3. Health

4. Participation

5. Context (cultural aspect)

The definition of ID must include the individual’s assessed supports needs. The person’s level of function is directly related to the supports they receive. When you look at the potential with appropriate supports then you have a complete system.

The supports must be sustainable in order to maintain functioning of the system.

We have the appropriate support systems in place for our residents who live in the RHC – and it has taken a lot of work to get to this point, we have oversight, we have trained staff, we have community, we have health care – we want others to have these same critical supports and this is why we advocate so strongly for a continuum of care.

Removing these supports from those who need them to function is not in the best interest of ANYONE.

Interesting Comments From The Arc of Snohomish County

This goes back to my own (non-scientific but easy and useful) assessment of function and needed supports for RHC communities:

1.  Can the person independently cross the street

2.  Can the person independently go to a familiar grocery store, pick out one familiar item, stand in line and pay for the item?

3.  Can the person independently and appropriately manage their own personal care needs?

My guess would be that for people who need supports to do all 3 of the above tasks, their support needs are quite high.  It would be extremely difficult and expensive to safely care for this person in an independent living home.  For people who have this high of support needs and for those who choose to live in an RHC community, the RHC community is the safest, least restrictive  and most cost effective environment for them.  This is where they will consistently receive the needed supports from trained and knowledgable staff in order to function at their optimal level.

This is not everyone’s choice but for those who do choose this environment,

why are they being denied that human and civil right?