Just my opinion

Caution – this is just my opinion – you may or may not agree, may be offended or not – but I own it.  You are allowed to comment, I won’t censor if you do not agree with me or if you hurt my feelings – I may tell you but I won’t censor your opinion.

When a person writes an “OPINION” essay and it is published  in a public online magazine it becomes open for discussion.  Some people who write “opinion” pieces become upset or hurt at comments that may be generated from readers who express their own opinion or have questions for the author of the original “OPINION” piece.

Isn’t  one objective of an “OPINION” essay to gather comments and hear what others may have to say?  It may be an opportunity to learn from others who may have a different opinion or to learn a different perspective from those who share the same opinion.

This issue is one that I have faced over and over again with regards to advocating for people with intellectual and developmental disabilities. Apparently there is a “right” opinion and if your opinion is different than that “right” opinion your comments may be deleted and you may be banned from further discussion.

This censorship only causes harm to those who the so-called advocates are supposedly advocating for.  Without an open discussion regarding various viewpoints people will be isolated and unable to work through problems that may exist.  Ignoring barriers to quality care and efforts to help support people in having a meaningful life only only makes the situation worse.  Unless you live in a fantasy world.

 

 

About us, Without us

 

This week I have had the opportunity to really see what trained self-advocates think of those who are not able to speak and share their own experiences or opinions.  I have been told over and over again by these trained self-advocates that as a parent/guardian, that my observations are self-serving and that “Nothing about us, without us”, the catch phase of self-advocates has nothing to do with guardians.

Sara Luterman for blog

 

Sara Luterman, editor of NOS Magazine, wrote “”Nothing about us without us” refers to disabled people. Since you are not disabled, it’s not about you.” Ms. Luterman sent me a link to an article she wrote in The Thinking Person’s Guide to Autism  and then added “You may find this helpful, particularly, ” Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy.”  Thank you, Ms. Luterman for letting me know what you think of people I know and love.

Comments from NOS editor Sara Luterman

Ms. Luterman makes many assumptions regarding the role of a guardian and clearly does not understand the legal and court appointed responsibility that a guardian has – that is to represent the person in their best interest.  If this role is denied, I’m curious how these trained self-advocates involve and understand those who are not able to voice their opinions to those who do not understand them.  While pushing their agenda forward without understanding or allowing those with guardians to share their perspective and needs they are practicing discrimination against those more vulnerable than the self-advocates who can read, write and speak themselves.

The censorship that is practiced by several groups of trained self-advocates makes it appear that there is unanimity in their advocacy for people with intellectual and developmental disabilities.  In fact, the opposite is true.  Even when people write “I am interested in others perspective on this, other than my own” the editor will not allow another perspective to be shared.

This is one reason that I write on this blog – to share other opinions and learn from others.  I have learned a great deal by the fact that I have been blocked from several sites that are run by trained self-advocates.  They have no intention of understanding the needs of others and are acting like selfish adolescents who are rebelling against their parents.   Will they continue on their developmental path to adulthood?

Comments to NOS Magazine regarding Mental Age Theory Sept 2017

 

NOS Magazine would not publish a comment responding to another parent asking for others perspective

About us, Without us

 

This week I have had the opportunity to really see what trained self-advocates think of those who are not able to speak and share their own experiences or opinions.  I have been told over and over again by these trained self-advocates that as a parent/guardian, that my observations are self-serving and that “Nothing about us, without us”, the catch phase of self-advocates has nothing to do with guardians.

Sara Luterman for blog

 

Sara Luterman, editor of NOS Magazine, wrote “”Nothing about us without us” refers to disabled people. Since you are not disabled, it’s not about you.” Ms. Luterman sent me a link to an article she wrote in The Thinking Person’s Guide to Autism  and then added “You may find this helpful, particularly, ” Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy.”  Thank you, Ms. Luterman for letting me know what you think of people I know and love.

Comments from NOS editor Sara Luterman

Ms. Luterman makes many assumptions regarding the role of a guardian and clearly does not understand the legal and court appointed responsibility that a guardian has – that is to represent the person in their best interest.  If this role is denied, I’m curious how these trained self-advocates involve and understand those who are not able to voice their opinions to those who do not understand them.  While pushing their agenda forward without understanding or allowing those with guardians to share their perspective and needs they are practicing discrimination against those more vulnerable than the self-advocates who can read, write and speak themselves.

The censorship that is practiced by several groups of trained self-advocates makes it appear that there is unanimity in their advocacy for people with intellectual and developmental disabilities.  In fact, the opposite is true.  Even when people write “I am interested in others perspective on this, other than my own” the editor will not allow another perspective to be shared.

This is one reason that I write on this blog – to share other opinions and learn from others.  I have learned a great deal by the fact that I have been blocked from several sites that are run by trained self-advocates.  They have no intention of understanding the needs of others and are acting like selfish adolescents who are rebelling against their parents.   Will they continue on their developmental path to adulthood?

Comments to NOS Magazine regarding Mental Age Theory Sept 2017

 

NOS Magazine would not publish a comment responding to another parent asking for others perspective

Mental Age Theory – Censored

Posting as a follow up to my previous post.  Apparently the editor of NOS Magazine did not approve of the comments that I and another advocate posted.  The comments have been deleted.  I have not received an answer from the editor regarding the reason for deletion.

I have had contact with the author of the article “Mental Age Theory Hurts People with Intellectual Disabilities” and I hope to meet with her and my son in the near future.  This is my attempt at trying to bridge the gap that is present due to what I refer to as “motive asymmetry”

Below is a link to the deleted comments – these are my comments and responses that were deleted.

NOS deleted my comments on mental age Sept 2017

 

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.

Washington State Developmental Disabilties Council

I am dismayed by the lack of unity and foresight that our state’s Developmental Disabilities Council is exhibiting.  I had thought that as a Federal-State Agency, they would be a the forefront of being an advocate for our citizens with developmental disabilities – in fact, it’s quit the opposite.

I had been warned by many of the council’s prejudice against anyone who advocated for a continuum of care.  Being optimistic, though, I thought that I would be able to talk to people and get them to see the truth of what was really happening.  I’m still optimistic but I have had a dose of their reality – meaning that the group is close minded and outright discriminates against our most vulnerable citizens who cannot speak for themselves.

I find this deplorable and irresponsible and I would urge this group to have a huge house-cleaning so that some new blood can help bring quality care and accessible, sustainable care to our citizens.  This group will not be able to reach that goal if they do not change their way of thinking.

They state that they have been recruiting new members – maybe they recruit but they do not ask people to join  – particularly people who may think differently.  I have applied, was not interviewed but did receive a letter from Governor Gregoire thanking me for my application but I was not selected.  My application must have been reviewed by the council though because this year, the vice chair (who I have never met or spoken with) wrote to me “Thank God you were not chosen to be on the council” along with some other choice comments and derogatory remarks.  Remarks that I also find irresponsible of the vice-chair of the state council.

While in a DDC meeting, there was an announcement that Frances Haddon Morgan Center would be closed by the end of the year.  One woman council member raised her arms and cheered – cheered at the demise of our loved ones – what type of advocacy is that?

Please, if you believe in advocacy which supports our citizens and looks to quality, sustainable and accessible care, consider writing to Ed Holen, Executive Director  or other staff members of the Developmental Disabilities Council with your concerns.  They need a dose of reality.

DDC Letter November 18

Thank you,

Cheryl

Please write to:

Developmental Disabilities Council

PO Box 48314
Olympia, WA 98504-8314

Ed Holen, Executive Director Ed.Holen@ddc.wa.gov

Jennifer Blazian, Contracts Manager Jennifer.Blazian@ddc.wa.gov

Sieng Bonham, Budget & Fiscal Director : Sieng.Bonham@ddc.wa.gov

Brian Dahl, Support Coordinator : Brian.Dahl@ddc.wa.gov

David Maltman, Policy and Community Partnerships Manager David.Maltman@ddc.wa.gov

Donna Patrick, Public Policy DirectorDonna.Patrick@ddc.wa.gov

Phillip Rasmussen, Receptionist Phillip.Rasmussen@ddc.wa.gov
Eva Rooks, Planning and Communications Manager Eva.Rooks@ddc.wa.gov

Linda West, Membership Services Coordinator  : Linda.West@ddc.wa.gov

Manic Psychosis tape

We hear so much about people with developmental disabilities.  Many advocates take family members to Olympia to meet our legislators.  There are many of us who have family members who are not able to go to Olympia to advocate for themselves.  I have been asked, if Fircrest is so great, why don’t we see residents down in Olympia?  This question was asked of me by one of the executive directors of a chapter of The Arc in our state.  Obviously she is unaware of the issues which most of our family members whose home is in an ICF/DD face everyday in their lives.

For an example, I am publishing this audio of my son.  What you will hear was very typical for every day in our house and would go on for hours and days.  Maybe after listening to this, that particular Arc executive will understand why ICF/DD residents are not able to advocate for themselves.

This is my reality.  Sound quality not the best (sorry) and audio starts at 1 minute