DD Ombudsman – Washington State

I have had contact with the new Office of the Developmental Disabilities Ombudsman in Washington State.  This is a critical organization for those with intellectual and developmental disabilities to be aware of regarding any concerns pertaining to their care and services received.  It is especially important for those who live in the State Operated Intermediate Care Facilities (ICFs) since these residents have no other objective advocate to review their concerns or complaints.

DD Ombuds logo

With that being said, I do have some reservations about reporting concerns to the DD Ombudsman.  The Protection & Advocacy Agency (Disability Rights Washington) which has been very vocal with their agenda of closing the ICFs, is the independent non-profit agency that was awarded the contract to administer the DD Ombudsman Program.  The Region 3 Ombudsman (Noah Sidel) was the previous Self-Advocacy Coordinator with The Arc of Washington working with Self Advocates in Leadership (SAIL) and has testified many times to legislative committees with the position that the ICFs need to be closed.

Given the history, it is very difficult to trust that the above biased agendas will not be pushed forward by the DD Ombuds office if concerns of those residing in the ICFs are reported.  I know that ICF residents and families have been reluctant to make any complaints regarding concerns out of fear their complaints will be used as “proof” that the ICF needs to be closed.   The history is that rather than looking at the problem and fixing it, the problem is used as a reason to close the ICF.

The problem is that when residents of state operated facilities make allegations the investigations are done by non-objective, state employees.  Many times these investigators are not healthcare providers and are not able to assess if the care provided met the community standard of care (medical and nursing care to be specific).  Once the Residential Care Services (under the Department of Health and Human Services) the facility administration or the State Investigative Unit have “investigated” and made their report, there is no ability to appeal or have an outside, non-DSHS employee review the allegations.

If state law were followed with regards to medical and nursing care of these residents, the oversight of the care would be provided by the Department of Health.  The management of nursing care and practice would be done by Registered Nurses – not non-nurse administrators.  Complaints regarding nursing or medical care would be reviewed by healthcare professionals not investigators who are not licensed healthcare providers.

These are systemic problems that need to be addressed.  My hope is that by bringing these critical problems to the attention of the DD Ombudsman, appropriate legislation will be written which will bring the oversight of the healthcare of residents in the ICF in compliance with the Washington State Law.

Below are some letters that describe the allegations and specific State Laws which were allegedly violated.  My intention regarding this information is so that these systemic problems are identified and corrected.  I support a full continuum of care and the ICF is a critical part of that continuum.  This information is not to be used in the agenda of closure but to address the issue of quality care and appropriate oversight of healthcare.
document for DD Ombuds

letter to Mr. Hakim regarding systemic issues of healthcare neglect at Fircrest

Letter to Senator Keiser regarding issues at Fircrest and DD Ombudsman 2017

Systemic Errors in Medication Administration at Fircrest

ODDO-Advisory-Committee-Meeting-Minutes-9.16.17

DD-Ombuds-Annual-Report-2017-Final

DD Stakeholder Survey for DD Ombudsman

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 – 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

 

 

Seattle Times “Opinion”

I want to be hopeful but am afraid that nothing will change.  Even though The Seattle Times published an article by Maureen O’Hagan entitled ” State ignoring abuse at group homes “ and The Seattle Times published the editorial “DSHS must investigate alleged abuse at group homes for the disabled” my hopes of reform fade.  We hear that The Arc – Washington State will be advocating with legislators on this.  The Arc-Washington writes “The basis of the problem lies with DSHS. It takes weeks or months for them to respond to reports of abuse and often nothing happens. The Governor proposes to add funding for more investigators.”

This is just “talk” and will amount to “no action” from The Arc, Disability Rights Washington, Washington State Developmental Disabilities Council and other agencies which receive public funds to advocate for this population.  The history is that they use these funds to discriminate our most vulnerable.   In the name of deinstitutionalization these groups have advocated for community inclusion.  What these groups do not understand is that many of these same people already lived in a community – it may have been a different type of community than what the people who run these organizations may choose to live in,  but it is a community for the people who find it supportive, safe and stable.

The mis-placed and misguided advocacy of these groups is also the basis of this problem.  I know that I am not the only one who has attempted to educate these advocacy groups on the issues of unsafe conditions in these group homes or issues of safety and stability.  These groups have not wanted to hear or acknowledge that there were problems.  They wanted to see that moving people from stable and safe supportive communities to individual homes scattered far from their friends and families to be “included” in community was an experiment that was succeeding. They wanted to see “inclusion” and “integration” work.  I do too – the difference is that I see inclusion as being part of the community – community meaning participating, contributing and belonging.  I believe each person can define what that community is to them and they can make a choice.  The misguided advocates do not allow people to make this choice and have defined “community” to mean something else.  Many times the “community” these misguided advocates force upon people does not lead to “inclusion” but to  ISOLATION and IMPRISONMENT.

This experiment failed – many have been harmed or killed.  It’s time to stop this experiment on unsuspecting people. How many of these people provided “informed consent” to this social experiment?

Where is the advocacy for improved oversight, better staffing levels, better pay for caregivers?  These are critical to improving care, safety and stability for all.  Yes, we need investigations but investigations without action will do nothing except waste more money and cause more harm.

 

 

Autistic Man walks away from drunk caretaker

This story exemplifies some of my worst fears.

Answers sought after autistic man walks away from drunk caretaker.

I hate to take advantage of situations which have caused harm to others but in this case, I must point out that this is the very issue which I am trying to advocate against.  I have been trying to have the so-called DD Advocates (The Arc, Disability Rights Washington, the Washington State Developmental Disabilities Council, the Community Residential Service Associates and others) look at the facts more accurately.  They refuse.  Maybe more stories such as this will help open their eyes to what they are really advocating for with regards to our most vulnerable citizens with the highest support needs.  They are not advocating for safe, quality, cost effective care but for substandard and negligent care.  Rather than advocating for the vendors, it is time they really advocated for our citizens in need.

Here is my post to the KOMO News story:

As a healthcare provider, parent of a child with intense support needs and advocate for our most vulnerable citizens, this story more than sickens me. I am appalled at the care, lack of oversight and more that is reported in this story and am so thankful that this man was found and will hopefully now be cared for in a caring, safe, healthy and humane environment for him.

I’m so afraid that we will hear more and more about abuses such as this one. The Arc, Disability Rights Washington and even the Washington State Developmental Disabilities Council all oppose any type of congregate care for our most vulnerable citizens – stating that all citizens can be safely cared for in community settings for less cost. The only way to have it cost less than a congregate care community is to endorse negligent care such as this type of care.

With staffing turnover rates of up to 45% in these community settings, there is no stability or sustainability and I wonder about the level of training and lack of back up support for the staff and residents. To me, this situation is a time bomb ready to go off at any moment.

This is so unfortunate since the so-called DD advocates will not address the facts about support care levels and safe care. They support the vendors, such as Service Alternatives rather than our loved ones.

I support a continuum of care model – a model which is based on the assessed needs and choices of the person and their family/guardian. This model includes the Residential Habilitation Center (Fircrest, Yakima Valley School, Rainier School and Lakeland Village) through independent homes. It is the safest and most cost effective model to best serve ALL our citizens with intellectual disabilities.

Much of the factual information has been shared with these so-called DD advocates and legislators – but they do not want to address the facts. I do hope that publicizing these tragedies will serve some good in knocking some sense into those who make the policies. Much of the research regarding the facts of the issues can be found at www.becausewecare1.com.

It is our duty as a society to safely care for our most vulnerable. Yes, this is a hard job, I know, I’ve been there and I am SO thankful for the care that our son is finally able to have at Fircrest. He loves his home there, he loves his school (Shorecrest) and he is active in his community. Yes, it’s not perfect but it’s the best we can do and it is the safest and least restrictive environment for him and many others.

I do know there are some excellent community homes with excellent caregivers.  We need to support our caregivers – they are the backbone which provide stability and sustainability.

Disability Right Washington argues against Guardians advocating for thier wards rights

Disability Rights Washington is our states’ Protection and Advocacy Agency.  One would think that an agency in that position would welcome the work of competent guardians who advocate for the  safety, stability and quality health care which their clients have need to survive.  The reality of the situation is quite the opposite.

Disability Rights Washington (DRW), working in a self-dealing and conflict of interest position, have argued against these guardians for the fact that the vulnerable wards of the guardians live at Fircrest, one of our state’s quality homes for some of our citizens with developmental disabilities with the highest support and medical needs.  DRW advocates for closure of Fircrest.

 

WA Supreme Court adopts DRW argument

Disability Rights Washington works against Guardians who advocate for the best interest of their clients

 

 

 

Hidden Costs, Access to Health Care, What are we to do?

I have attached two essays which help explain part of the problem of access to healthcare and hidden costs when people and agencies which masquerade as Disability Advocates push for the closure of the Intermediate Care Facility for People with Developmental Disabilities (ICF/DD).  These so-called advocates’ agenda is based on old school ideas and false information for today’s population.  The proposals they have will end up costing more, reducing services all around and hurting everyone.

 

Now is the time for some new thoughts and actions – please read the attached and post comments.

 

Thank you – Cheryl

Medical Home Essay

Hidden Costs of care