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.

Our Citizens are worth the fight to maintain civil rights

Let’s uphold the civil rights of all of our citizens, regardless if they are able to stand up for themselves or make their voices heard.

Over and over again, we hear about a fictitious number of DDD clients who do not receive services, we hear about  how keeping our RHCs open takes away services from those who may need services and our most vulnerable citizens with the most complex needs are continually accused of using more than their share of the pot which makes others go without. 

 This is the “Big Lie” that is told over and over again by agencies which masquerade as Disability Advocates.  They state that it is cheaper to care for these individuals in the community – yes, that’s true if you do not support their assessed needs.  That’s this issue – these individuals have needs that have been assessed and they are in the environment which best supports their needs in order for them to be as active and successful in their life and community as they can be. 

 Yes, there are individuals with just as complex needs living in the community – no one is denying that fact.  Also, no one is telling those individuals or their families that their care is too costly so they will be evicted.  These individuals are celebrated for the fact that they live in the community  – no matter what the cost.  But I ask, are they really “in the community?”

 I’ll tell a story of a man that has recently moved out of Frances Haddon Morgan Center.  This man has been celebrated as a success for the Roads to Community Living Grant.  I attended a parent gathering this past spring which was geared at informing parents/guardians of the benefits of moving their loved ones out of an institution.  Brock was the example they highlighted in showing how great this program could be.  There is a video on Youtube entitled “Brock 8” which refers to this gentleman.

 At this gathering, we were told that the transition for Brock was very intense involving many specialists and took about 2 years.   In those two years, there was much property destruction that needed to be fixed due to Brock’s behavior.  Brock and anyone who would be working with him needed to be trained in the Picture Exchange Communication System (PECS) which Brock would be using in his new job situation.  Everyone from the Residential agency, DDD and other programs which were involved with Brock’s transition spoke to the difficulties but that over time (2 years) Brock was able to live in a community home and have a job. 

 What was very interesting to me was that they then said, “He had that job for about 2 months but isn’t working now but we won’t go into that.”  I took that to mean that this expensive experiment wasn’t as successful as they wanted to picture it so they were going to end the success story at this point.   I later asked about this but due to HIPPA, I am not privy to the information but was told that yes, Brock was not working but was “volunteering.”  There had been a change in vendors and since it had taken several months to train the previous vendor, it would be anticipated that there would again need to be months of training for a new vendor. 

 I do know that there are two young men who have moved out of an institution into a community home.  For these two men, who cannot have others living with them due to safety issues, the staff and housing for each of these men is at least $500,000 a year.  (DSHS)

 I was provided with the list of the 30 most expensive clients for community residential clients by DDD.  The average annual rate for this group is $218.000 per year (range = $181,603- $353,973) – that is only the portion of care that DDD expends.  This does not include other services in the DSHS package such as medical, economic aid, transportation or food stamps.   There are other clients who receive 16 hours private duty nursing care in addition to other services to enable them to live in a community home.

{For reference, the average annual comprehensive cost for an RHC resident is $186,000 (DSHS)}

 These are the complex care clients who live in the community and these clients are expensive no matter where they live.  Moving more complex clients out into community homes against their wishes only for the sake of ideology of the masquerading advocates is a nightmare.  There is so much wrong with this scenario yet because of the untruths and rhetoric that are continually published without question, people believe what they are told. 

 

Our citizens deserve better. 

 When a person chooses the environment which works for them as guaranteed under Federal Decisions, no one should be able to evict them from their homes.  On top of this, the reasons given are under false pretenses:  less expensive, more involved in community, better care – none of these reasons can stand up when the facts are presented.  The problem is that the facts are not presented or presented but tossed aside because they do not support this ideology gone awry. 

 One huge part of this problem is due to the silo effect as explained in my previous post.  Sure, maybe moving a client out of the institution would make the DDD budget less but those costs are still there under another program within DSHS or put upon the community (as in increased emergency calls to the Fire and Police Departments.)  It’s time that our government, legislators, advocacy agencies and citizens were responsible and looked at the whole picture of care – not just the peephole that suits their cause. 

 It is clear from actually looking at the figures that in reality, the comprehensive care in the RHC is much more cost effective than care for an individual who chooses to live in the community.   I don’t understand why the residents who choose to live in the RHC, which is clearly a cost effective care center which supports their assessed needs, are harassed and threatened with eviction, due to their care being expensive when in reality, their care is less expensive than if they chose a community setting. 

 Yet, if they chose a community setting, the cost of their care would greatly increase, yet these same advocacy groups who complain about their current care being too expensive, would then celebrate in the fact that their care is now community based, yet much more expensive.   

THIS JUST DOES NOT MAKE SENSE if one really cared about the person.  So, obviously, this issue is not about the care of the person but about something else.  Who are these advocacy groups really advocating for? 

 

 

Works Cited

DSHS. “DSHS Client Services FY 2007-2008.” n.d. http://clientdata.rda.dshs.wa.gov/ReportServer/Pages/ReportViewer.aspx?/CSDBAnyYear/Landscape_StateClientSvcsByAge.


Washington State Senators who voted “Yes” on SSB 5459 are tagged in this message.  I don’t believe that these Senators were exposed to the real issues or that the facts were presented to them.  I believe that their decisions on this case may have been based on rhetoric and false assumptions that prevailed in the legislative session.  I would love to talk to any of them and try to educate them on the real issues with real people and real cases involved.