What do gardens have to do with oversight?

I love to garden and share that love with others. This is a joy that I share with my son. When he was younger and lived at home he would follow me around the yard and loved to rub his hands on the various herbs and then smell his hands.  He learned what they all were and where they were in the garden.

We currently have a plot in a community pea-patch and one of his favorite activities is sitting in the garden having a snack talking about the various plants we are growing and checking on his flowers.  Tonight we picked some of his huge sunflowers and will save the seeds for bird food in the winter.IMG_1919

Gardening, harvesting, and composting are great activities for people.  Learning skills in these areas can provide not only vocational skills but life skills, recreational skills and exercise to those with intellectual disabilities.

For a few years we had wonderful gardens growing at Fircrest.  Residents were planning meals, harvesting, preparing and sharing.  We were also learning worm composting and one resident even started selling the worms to a local garden store.  This was part of the “Active Treatment” at Fircrest and was set to expand.

With a recent survey that targeted the lack of “active treatment” and the promises of administration stating that the job training program was going to expand brought hope. The new emphasis on active treatment was promising and the news that tomato plants had arrived last April was a step in the right direction.

The hope has been shattered by the reality of the deserted and abandoned garden beds, the empty greenhouses with dead plants and the worm bins that have become garbage cans.  I have even offered several times to continue volunteering to help teach staff how to teach residents or work with residents myself but am ignored and told they are working on expanding.  From the outside it appears that things are getting worse, not better.

This is where oversight comes in.  We are told over and over that there is great oversight at the intermediate care facilities.  But oversight by who and oversight of what?

I believe that oversight should not be left  just to the state agencies but is up to each of us to keep an eye open and ask questions.  For instance, why are these garden beds abandoned and why are the few plants in the greenhouses dead?

I have asked and have offered to volunteer on campus or find a new home for the greenhouses and worm bins so that they can be used by others.  I dream of developing a learning garden in the area for people with intellectual disabilities and these would be prefect.  The answer I got was that they are not for sale and they will not lease the area to others to use.

Please look at the link  Active treatment and gardening at Fircrest.  If you have any suggestions for improvements, please let me know.  This was such a great boost for the residents and it makes me so sad to see it going to waste.

Please share this information and maybe there is some vocational training group or agency that can make something happen so that the time, talents and goods are used to their potential.

 

 

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

 

 

Why the confusion, King 5?

We often hear varying opinions about what the cost of care for people with intellectual disabilities really is.  This  should not be so difficult to figure out given that there are resources upon resources to use.  For some reason though, several of the resources which could give us the best information are not used.  This makes no sense to me unless the goal is to keep the public and legislators confused and to keep pretending that there is no real way to make a comparison of cost for community and institutional care.

In the most recent airing of “Last of the Institutions” by investigative reporter Susannah Frame of King 5 News, she did refer to the cost of care for one young man with high support needs.  He lives in a home supported by Alpha Supported Living.  Ms. Frame also interviewed Scott Livengood, CEO of Alpha Supported Living and referenced the “average” cost of care for those in dispersed community housing.  This young man’s daily care cost is $370.00 – far higher than the “average” cost reported to legislators and the public.

Using this “average” cost is a tactic that is used to hide the truth of the issue.  Those in DDA and the agencies know full well what the cost of care of each individual in a community setting is.  Each agency has negotiated with DDA the exact number of hours and supports that each of their clients will need.  It is no mystery.  Pretending that those with high support needs can be cared for at the “average” cost is nothing but a lie.

For instance, a couple of years ago I was given the daily rates for the cost of care of the 30 residents with the highest support needs and cost.  The daily range was $497 to $969 with an average direct care cost of $598.  If there was an “average” to use for the cost of care for residents in the shared community if they were to move to dispersed housing, this would be the average to use.  See this link for the chart with the costs and the support needs assessments of these clients. Highest 30 Residential Clients by Cost and acuity

I spoke with Russ Walker, Executive Producer for King 5 Investigators.  I brought up the issue of the dispersed community costs not including medical, dental, nursing care, prescription medications, and food – just to highlight a few cost centers.  Mr. Walker assured me that the costs did include these and they knew since Mr. Livengood had showed them the accounting for Alpha Supported Living. It’s interesting to note that the Certified Cost Report for Alpha Supported Living does not include these costs.  Certified Cost Report for Alpha Supported Living 2014

When looking at the actual data,  the calculations and cost accounts are very different than what is provided to our legislators and public.  When I have presented these differences to some legislators, Disability Rights Washington, the Developmental Disabilities Council and The Arc Chapters – the common response is refusal to communicate.    They have not been able to prove me wrong even when given the opportunity to do so.  I believe this means they are not able to prove me wrong.

Take a look for yourself and decide – what costs are missing from the community support side of the equation?  Do the costs add up as equal in your judgement and calculations?   Click the link for a table of the daily cost per resident.

Shared Community RHC and Alpha Supported Living Cost Comparison

I am using Alpha Supported Living as the example since this is the agency that Susannah Frame used in her investigation.  Alpha Supported Living is one of the better agencies yet the reimbursement from the state barely covers the cost.  Alpha has major fundraising campaigns to raise money to provide quality services to their residents.

Alpha Supported Living 990 2014

DDA Account Descriptions

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

 

“Last of the Institutions” – part 3

“Last of the Institutions” – Part 3 will air tomorrow (Wednesday, November 18, 2015) on King 5 in Seattle.  Susannah Frame, the investigator on this story has promised this segment will have the stories and view points of families, guardians, professionals and community members who support a full continuum of care for our most vulnerable.

I have been hard on Susannah Frame for the impressions that she has given with regards these issues.  I am hard on her since she has been given some information that contradicts much of what she has reported yet has not addressed the issues.  I thought that was what an investigation was intended to do and maybe I’m just impatient.

From my perspective and the perspective of many advocates for people with intellectual and developmental disabilities, Susannah Frame has only regurgitated the rhetoric we have heard for years without looking into why advocates claim the reports (which she terms “scientific research”) are misinterpreted and fall very short of addressing the diversity of the population.

Yes, it is true that MOST people with intellectual/developmental disabilities can live in small community homes and settings but we are not talking about MOST in this situation.  We are talking about those who have the very highest support needs and we are talking about safe, appropriate and integrative care.

It is also true that there are some people with these extremely high support needs who do live in small community family homes and settings.  No one disputes that fact either.

What we need to understand is that for these people who have extremely high support needs, their care is expensive – no matter where they live.  In fact, the cost of their daily personal care alone in a small community home is greater than full, comprehensive care in a therapeutic community.

We only have so many resources to go around and share with a diverse population.  What is disturbing to me is this so-called advocacy that wants to evict people from their homes only to push them into another community that will not be able to accommodate their needs.  This will then create a much larger crisis for those on the other end of the spectrum who only need a little support – they will go without.  Is this advocacy?