I (and others) have been misled

For several years I was under the impression that the Intermediate Care Facility (ICF/ID) and Residential Habilitation Center (RHC) where my son lived was also a healthcare facility.  We were led to believe that the medical and nursing providers had oversight by the Department of Health which also provided oversight to what was referred to as “the healthcare clinic.”

The ICF/ID and RHCs are NOT healthcare facilities.  There is no professional peer review or oversight by the Department of Health.  I have learned this lesson after years of frustration trying to get appropriate medical and nursing care for my son who was a resident of the RHC.

While these facilities in Washington State employ Physicians, Nurses, Physical, Occupational and Speech Therapists to provide care to the residents, there is no state oversight of this care to ensure it meets the community standard of care that everyone should be entitled to.  The residents and their families/guardians are led to believe that appropriate medical and nursing care is provided but in some cases, I believe this is not happening.

This is a systems problem that no one seems to be able to address.  The Department of Health has no oversight, the Department of Social and Health Services does not look at healthcare standards, the Long Term Care Ombudsman does not oversee anything having to to with the Intermediate Care Facility or RHC, Disability Rights Washington (the Protection and Advocacy Agency) has not addressed this problem.

I fully support the idea of an intermediate care facility and a campus community that can provide full service health and behavioral care but the system in place in our state does not meet this standard.  It is shameful that the agency which oversees the RHC cannot see that there are major problems ensuring the healthcare for the residents is provided for.

It appears to me that our state is not meeting the Federal Regulations  and the so-called “investigations” that have been done have been a waste of time and energy.    This is so frustrating  – when they can not even see the problem, there is no opportunity to fix it.  The whole system is in denial and it is only hurting the very people who are supposed to be helped.

The investigator I spoke with today made it very clear by her repeated statement of “the RHC is not a healthcare facility” and by the regulations she had there were no deficiencies to cite.

I read the Code of Federal Regulations differently though – Below is the exact text from the Code of Federal Regulations  – am I reading this incorrectly?

  • 440.150   Intermediate care facility (ICF/IID) services.

(a) “ICF/IID services” means those items and services furnished in an intermediate care facility for Individuals with Intellectual Disabilities if the following conditions are met:

(1) The facility fully meets the requirements for a State license to provide services that are above the level of room and board;

(2) The primary purpose of the ICF/IID is to furnish health or rehabilitative services to persons with Intellectual Disability or persons with related conditions;

(3) The ICF/IID meets the standards specified in subpart I of part 483 of this chapter.

(4) The beneficiary with Intellectual Disability for whom payment is requested is receiving active treatment, as specified in §483.440 of this chapter.

(5) The ICF/IID has been certified to meet the requirements of subpart C of part 442 of this chapter, as evidenced by a valid agreement between the Medicaid agency and the facility for furnishing ICF/IID services and making payments for these services under the plan

So, my questions are is our state our of compliance by the ICF/ID or RHC not being a healthcare facility?

If so, how is this remedied?

 

 

 

It’s not Scientific Research – part 2

The Policy Report that Susanna Frame refers to as “scientific research” is not scientific research but a literature review looking at one aspect of life. The Policy Brief she shares is not a scientific research and the authors note that for those with severe intellectual disabilities with complex support needs there has been a huge gap in the research.

Promoting choice and person centered supports comes with an added responsibility to ensure that individuals and families are given the opportunity to have accurate information about the many complexities involved with their care.

While the deinstitutionalization movement started with great intentions – this movement has gotten out of hand without a grip on the reality of the situation.

Wolf Wolfensberger (1934-2011) was instrumental in the formulation of the concept of personal value and meaningful integration and inclusion of people with intellectual disabilities.

“Wolfensberger (2003) has indicated that the advent of the ideologies of radical individualism coupled with radical self-determination and the derivative constructs of ‘choice’, self-advocacy and empowerment has resulted in many people with ID being turned loose without any, or without sufficient, supports, guidance, tutelage or outright controls.  Wolfensberger singles out for particular criticism the kind of assertiveness training promoted by People First and other collective advocacy groups. “(Jackson, 2011)

There are several groups that are supported by public funds that partake in this radical advocacy movement.  They refuse to collaborate with others who are more holistic, take a strident tone and alienate those who may question their tactics or ideology.   The Arc, SAW (Self-Advocates Washington), SAIL (Self Advocates in Leadership), Parent to Parent, Washington State Parent Coalitions for Developmental Disabilities are several of these organizations which have become wedded to this radical agenda of black/white choices.

These groups are working with for-profit vendors to polarize advocates to “community” or “institutionalization” to the complete exclusion of true choice and alternatives.  The politicization of the research agenda which is dictated by external bodies is doing our citizens a great disservice.

This so-called “investigation” by Susannah Frame from King 5 plays right into this agenda.  It has been clear from the start of the biases and lack of research and facts.  The complexities of the issues have not been addressed nor has there been any information given as to why advocates may not agree with the “choice” that they are told is the “right” choice.   Many question the credibility and ethics of the authors of the reports and the so-called “scientific” research.

While it seems that community cost is less by the limited data that is provided, it is not really about cost – nor is it really about choice – it is about something else – it’s about an ideology that is going to lead to disaster if no one is allowed to question it.

Paradoxically, instead of being genuinely enabling, empowering and liberalizing, ideology is being deployed to support policies which benefit the for-profit vendors.  This is big business and many community vendors are making a large profit from the care of vulnerable people.

Scott Livengood, CEO of Alpha Supported Living, would be able to tell you that his company cannot accommodate many residents with the high support needs of Yusuf – the young man portrayed in the recent segment.

Alpha Supported Living does a great job of supporting Yusef and others but some of these agencies are not so well staffed or managed well.   Records indicate that Yusef’s daily personal care comes to about $370.00 a day – yes that is less expensive than the daily care rate at the RHC but what is missing from this information is the cost of all the other aspects of care – food, shelter, health care, transportation – just to highlight a few costs that can add up rather quickly.

Any Supported Living Provider will say that they cannot afford to care for people with this level of care with the low rate of reimbursement that they receive from our state.  The funding for this care comes from the Home and Community Based Service Waiver (HCBS) and each state has a different program for funding.

While it has been stated that Washington is decades behind – the facts show otherwise.  There are 12 states that do not have any large State-Operated ICFs but that does not mean that they do no not have private ICFs or nursing homes or utilize those services from an ICF in another state.  In order to move people from the ICF to a dispersed community setting, it would be critical to know what the resources are in the community and if there is funding available to provide the specialized services and to sustain them.

The chart below has data taken from The State of the States (the same resource that Susannah Frame used for her information).  One can see that every state has some residents in an ICF/ID or nursing home.  It is also important to note the HCBS per capita spending for those who live in dispersed community settings.  The states with fewer people in larger facilities spend much more per capita on the HCBS waivers.

Washington, with a HCBS cost of $87.00 is below the national average of $129.00.  Those states with no large state-operated facilities spend an average of $175.00 per capita on HCBS waivers.  This care also comes with a cost. It needs to be noted that the HCBS costs do not include cost of living expenses such as rent, food, medical care which are all included in the ICF/ID costs.

If this was all about cost we would not be having these discussions.

Data taken from “The State of the States in Developmental Disabilities” Fiscal Year 2013 and Centers for Medicaid and Medicare Home and Community Based Spending FY 2013

Graph sorted by percent of ID residents in /ID and Nursing Facilities

HCBS spending per capita and ID residents 2013

 

Graph sorted by State spending on HCBS waivers FY 2013

HCBS spending with ID Residents

 

King 5 “Last of the Institutions” Part 4

 

Resources used:

 

Ailey, Sarah H., et al. “Factors related to complications among adult patients with intellectual disabilities hospitalized at an academic medical center.” Intellectual And Developmental Disabilities 53, no. 2 (April 2015): 114-119.

Arnold, Samuel R. C., Vivienne C. Riches, and Roger J. Stancliffe. 2014. “I-CAN: The Classification and Prediction of Support Needs.” Journal Of Applied Research In Intellectual Disabilities 27, no. 2: 97.

Bershadsky, Julie, Sarah Taub, Joshua Engler, Charles R. Moseley, K. Charlie Lakin, Roger J. Stancliffe, Sheryl Larson, Renata Ticha, Caitlin Bailey, and Valerie Bradley. 2012. “Place of Residence and Preventive Health Care for Intellectual and Developmental Disabilities Services Recipients in 20 States.” Public Health Reports 127, no. 5: 475-485

Bigby, Christine. “Known well by no-one: Trends in the informal social networks of middle-aged and older people with intellectual disability five years after moving to the community.” Journal Of Intellectual & Developmental Disability 33, no. 2 (June 2008): 148-157.

Centers for Medicaid and Medicare, 2015. Medicaid Expenditures for Long-Term Services and Supports (LTSS) in FY 2013: Home and Community-Based Services were a Majority of LTSS Spending June 30, 2015, s.l.: Centers for Medicaid and Medicare.

Cooper, Sally-Ann, et al. “Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis.” BMC Family Practice 16, no. 1 (August 2015): 1.

Erickson S, LeRoy B. Health literacy and medication administration performance by caregivers of adults with developmental disabilities. Journal Of The American Pharmacists Association: Japha [serial online]. March 2015;55(2):169

Felce, David. “Costs, Quality And Staffing In Services For People With Severe Learning Disabilities.” Journal Of Mental Health 3.4 (1994): 495-506.

Friedman, Carli, Amie Lulinski, and Mary C. Rizzolo. “Mental/behavioral health services: Medicaid home and community-based services 1915(c) waiver allocation for people with intellectual and developmental disabilities.” Intellectual And Developmental Disabilities 53, no. 4 (August 2015): 257-270.

Hamden, AnnNewton, RichardMcCauley-Elsom, KayCross, Wendy. “Is Deinstitutionalization Working In Our Community?.” International Journal Of Mental Health Nursing 20.4 (2011): 274-283.

Hamelin, Jeffery P., et al. “Meta-Analysis Of Deinstitutionalisation Adaptive Behaviour Outcomes: Research And Clinical Implications.” Journal Of Intellectual And Developmental Disability 36.1 (2011): 61-72.

Hewitt, Amy. “Presidential Address, 2014—Embracing complexity: Community inclusion, participation, and citizenship.” Intellectual And Developmental Disabilities 52, no. 6 (December 2014): 475-495.

Jackson, R. “Invited review: Challenges of residential and community care: ‘the times they are a‐changin’.” Journal Of Intellectual Disability Research 55, no. 9 (September 2011): 933-944.

Kelly, Susan, and Yani Su. “Psychotropic and anticonvulsant medication: Individuals with intellectual and developmental disabilities who transitioned to the community from an institution.” Intellectual And Developmental Disabilities 53, no. 4 (August 2015): 289-300.

Lakin K, Prouty R, Polister B, Coucouvanis K. Data Briefs: Change in Residential Placements for Persons with Intellectual and Developmental Disabilities in the USA in the Last Two Decades. Journal Of Intellectual And Developmental Disability [serial online]. June 1, 2003;28(2):205-10.

Larson S, Lakin C, Hill S. Behavioral Outcomes of Moving From Institutional to Community Living for People With Intellectual and Developmental Disabilities: U.S. Studies From 1977 to 2010. Research & Practice For Persons With Severe Disabilities [serial online]. Winter2012 2012;37(4):235-246.

Luckasson, Ruth, and Robert L. Schalock. “Standards to guide the use of clinical judgment in the field of intellectual disability.” Intellectual And Developmental Disabilities 53, no. 3 (June 2015): 240-251.PsycINFO, EBSCOhost (accessed November 28, 2015).

Mansell, Jim, and Julie Beadle-Brown. “Deinstitutionalisation and community living: Position statement of the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities.” Journal Of Intellectual Disability Research 54, no. 2 (February 2010): 104-112

Martinez-Leal, R., et al. “The Impact Of Living Arrangements And Deinstitutionalisation In The Health Status Of Persons With Intellectual Disability In Europe.” Journal Of Intellectual Disability Research 55.9 (2011): 858-872

Nøttestad, Jim Aa., and O. M. Linaker. “Psychotropic Drug Use Among People With Intellectual Disability Before And After Deinstitutionalization.” Journal Of Intellectual Disability Research 47.6 (2003): 464-471.  2015.

Snell, Martha E., et al. “Characteristics and needs of people with intellectual disability who have higher IQs.” Intellectual And Developmental Disabilities 47, no. 3 (June 2009): 220-233.

Stancliffe, Roger J, Eric Emerson, and K Charlie Lakin. “Community living and people with intellectual disability: Introduction to Part I.” Journal Of Intellectual & Developmental Disability 25, no. 4 (December 2000): 1-4.

Stancliffe, Roger J, and Sian Keane. “Outcomes And Costs Of Community Living: A Matched Comparison Of Group Homes And Semi-Independent Living.” Journal Of Intellectual & Developmental Disability25.4 (2000): 281-305.

Swenson S, Lakin C. A wicked problem: Can governments be fair to families living with disabilities?. Family Relations: An Interdisciplinary Journal Of Applied Family Studies [serial online]. February 2014;63(1):185-191

Ticha R, Hewitt A, Nord D, Larson S. System and Individual Outcomes and Their Predictors in Services and Support for People With IDD. Intellectual And Developmental Disabilities [serial on the Internet]. (2013), [cited November 27, 2015]; 51(5): 298-315.

It’s not science!

This post will provide some additional information to help clarify some of the mis-information that is being reported by Susannah Frame in her “Last of the Institutions” series on King 5 in Seattle, WA

  • The reports referenced by Susannah Frame are not “scientific research” but social research with many variables that cannot be generalized. The Policy Brief she shares is not a scientific research and the authors note that for those with severe ID with complex support needs, there has been a huge gap in the research.

From Charlie Lakin Research Article: (Susannah refers him as one of the countries foremost researchers)
“The higher level of support needed by people with more severe disabilities provides a greater challenge in assisting them to live in personal housing. The per-person cost of providing paid supports is one important such challenge.”


“They concluded that no economies of scale could be established in the existing research, except in very small residential settings, in which the decreased number of people in the home necessitated an increased staffing ratio. The critical point is reached at which there is a need for one staff member at all times, so that if the number of people in the home further decreased, the ratio of staff to residents necessarily increases. Unless nonpaid or differently paid supports are introduced, the per-person cost of support increases. ‘‘Such diseconomies of very small scale apply only in residential services when the service model or the residents’ support needs require continuous paid staff presence’’ [Lakin and Stancliffe, 2005, p. 324]. This is most often the case for persons with severe disabilities.


Lakin, K., & Roger, S. (2007). Residential Supports for Persons with Intellectual and Developmental Disabilities. Mental Retardation and Developmental Disabilities Research News, 151-159.

  • Susanna Frame reports that Washington is decades behind other states yet the most recent data (which she has also looked at and referenced) shows a different story:This is what Susannah Frame says” Washington state has a larger population of developmentally disabled adults living in state-run institutions than nearly every other state in the union.” Look at the data – I don’t see how Susannah Frame came to her conclusion – someone must have just told her that and she believed it.

    Data taken from “The State of the States in Developmental Disabilities” Fiscal Year 2013
    http://www.stateofthestates.org/…/intell…/state-profiles

Percent of IDD in state ICF ID and Nursing facilitiesPercent of IDD in private ICF ID and other facilities

Scott Livengood, CEO of the supported living agency Alpha Supported Living, weighs in with his comments about the cost of care.  Mr. Livengood knows full well what the cost of care for people with complex, high support needs are.  His agency needs to negotiate with DDA for hours to ensure that the residents have the support needs.  He also knows that those with higher support needs require more personal care and their care is more expensive.

I do not understand the extreme reaction that Mr. Livengood had with regards to maintaining safe building structures for those at the RHC.  One of the reasons that the costs are so high now is that the state has allowed the buildings to dilapidate and go into dis-repair.  Is it wrong to provide safe living conditions?  It is time that some efforts were put forth to maintain the residences.

And just like union workers at the RHC who have jobs and make a meager living, Mr. Livengood’s job is also tied to caring for this population.  One major difference is he has a hefty salary with annual bonuses and has had raises of 12 and 10 percent in the years 2012 and 2013.  His 2013 reported base salary (IRS Form 990) was $248,950 with bonuses and benefits bringing his full earnings to over $290,000.

This post refers to the King 5 Series “Last of the Institutions

 

Please Ask DSHS and DDD These Questions!

This letter was sent to all Washington State Legislators and many other advocates.  I do hope that these questions are asked and that answers are received.

 

december 1 letter to legislator and others

 

The Department of Social and Health Services and the Division of Developmental Disabilities NEED to answer these questions and more.  The data that they continually present to our legislators is flawed and incomplete and doesn’t tell the whole story as it needs to be told in order to make policy decisions.

 

This is who we need to ask questions of:

DSHS – Aging and Disability Services Administration Tree

Susan N. Dreyfus, Secretary

Department of Social &  Health Services

Susan.Dreyfus@dshs.wa.gov

 

Don Clintsman

Division of Developmental  Disabilities

Aging & Disability  Services Admin

donald.clintsman@dshs.wa.gov

 

 

Janet Adams

Office of Quality Assurance and Self Directed Services

adamsje@dshs.wa.gov

 

 

Imprisonment for people, death to some – It’s coming down to that –

Our state is in a crisis – that’s not news to anyone.  Some of the crisis is self-made from some “advocates” who have pushed inaccurate information to our legislators.  The false information and reports based on inaccurate data were utilized in decision making – decisions that are now coming back to bite us.

There are some solutions but people will have to acknowlegde some mistakes that were made.  Here is just one solution – retention of Direct Support Staff –

We need to think of Quality of Life for our citizens with developmental disabilties.  Having staff turnover rates up up to 44% is not only disturbing but dangerous and expensive.  Do you know that if we changed and tweeked the system just a little, we could save over $28,000,000 and improve the quality of life not only for residents but also for caregivers?

Do you know that moving some residents to small community homes will be imprisonment for them?  Without staff to care for them or staff to take them to appointments and community outings, they will be imprisoned in their homes – is this the type of life that you would wish on anyone?

One can clearly see there is a huge problem: Not even taking into account the effect on residents and the loss of knowledge and skills in relating to residents when staff leave, the lack of continuity in care (all which add to stress and increased behavior issues in residents), all the other issues with staff turnover that are seen in the business world are seen here too.

On average it is concluded that it costs about the annual salary of the person to replace that person – so given that, how much money could be saved in retention of staff (increased wages would help and would clearly offset the cost of staff turnover) which would then improve the quality of life.

Group Home Direct Care Staff make roughly $10.00/hour (some more, some less range is $8.55 – 13.62 in 2010) so that calculates out to about $20,000 for each person – so for 2010 in group homes that comes to $2,100,000 dollars on just staff turnover!!!!

Supported Living is $28,900,000

Now those are some ridiculous numbers – One of the keys to this problem is to look at staffing and how to retain the staff – This is what will not only save money but  improve the quality of life for EVERYONE!!!

Now is the time to think about new systems  – think outside the box (sorry for the cliche)

 The data for this chart was obtained from the DDD Residential Programs Staffing Wage & Turnover Study, years 2008, 2009 and 2010

Type of Program 2008 2009 2010
Group Home 48.1 44.3 39.2
Supported Living 44.7 37.8 35.8
SOLA 18.9 14.9 14.4

We Cannot Afford to Allow DSHS to Waste More Money

The mismanagement of our Department of Social and Health Services never ceases to amaze me.  When I started researching the Washington State Auditor’s reports and realized how many millions of dollars DSHS was costing our state, I was appalled.  I am continually amazed at the department and the lack of integrity and mismanagement that is apparent throughout the services.  It’s not only dollars that are wasted but vulnerable people are being hurt.

With all the budget cuts, and many of those cuts affecting more and more people, some worse than others, it is time for DSHS to get a grip of their programs and manage them and the personnel responsibly.

October 7, 2011

Dear Colleagues, Partners and tribal and community leaders:

We wanted you to be aware of a story that is scheduled to run Monday night on KING TV, reported by Susannah Frame, on employees who spent lengthy stays on home assignment while under investigation for alleged improper or illegal conduct. One Department of Social and Health Services employee at the Special Commitment Center was on home assignment (paid administrative leave) for 3½ years.

Important things to know about this story:

1.       The SCC employee was involved in an ongoing state and federal investigation of contraband smuggling at the SCC and her employment was terminated early this year. Department leadership found that a home assignment of such long duration, regardless of the intervening complexity of the federal investigation, was unacceptable.

2.       Nearly a year ago, DSHS Chief of Staff Tracy Guerin ordered a change in policy on home assignments. Any home assignment of more than 48 hours must be approved by DSHS Chief of Staff or Human Relations Senior Director. The decision even to make a home assignment of 48 hours or less must be based on imminent safety or security reasons.

3.       As of Monday, the Department had one employee reported on home assignment and that person’s employment was to be terminated this week.

Thomas Shapley

Senior Director

DSHS Public Affairs

Thomas.shapley@dshs.wa.gov

360-902-8007

DD Advocates need to come clean with accurate information!

It is critical to drop the adherence to the ideology that “community” living is best and less costly than living in an ICF/DD for many of our high needs citizens with developmental disabilities.  This dogmatic approach is hurting everyone of us – disabled or not.  A continuum of care model takes variety into consideration in addition to cost effectiveness, safety and quality.  A continuum of care model is what needs to be looked at – a model which benefits everyone – disabled or not.

Please see this link for information Come Clean.  This roughly outlines some of these issues.  Resources and accurate data taken from DDD and DSHS management sources.