Beyond Frailty:

What the Disability Rights

Movement Can Teach Counselor-

Advocates

Thomas Christensen, MS, NCC, LMHC

AADA Summer ConferenceArlington, Virginia

7/25/2014

www.adapt.org

https://

disabilityrightscenter.wordpress.com/

tag/tom-olin/

www.doloffmybody.org

www.notdeadyet.org

http://nursinghomes.nyhealth.gov

Special Thanks & Appreciation:

Charlton (1998). Nothing about us without us: Disability

oppression and empowerment. Berkley: University of

California Press.

10 years mental health consumer

advocacy practice as Vice President of MHA-

Rochester.

6 years child & youth advocacy practice as

an Executive Committee member of YSQC.

5 years cross-disability consumer

advocacy practice on the Board of Directors

for RCIL.

Positionality as an Advocate

PhD candidate in Counseling & Counselor

Education. Currently adjunct faculty in CAT.

NCC & LMHC with 28 years of continuous

post-Masters’ clinical mental health practice.

7 years of specialized clinical practice

counseling residents of 13 nursing homes.

Positionality as a Counselor

Adapted from Figure 1 in “Biomarkers of frailty in older persons” by Ferrucci, L.,

Cavazzini, C., Corsi, A., Bartali, B., Russo, C. R., Lauretani, F., . . . Guralnik, J. M.

(2002). Journal of Endocrinological Investigation, 25(10 Suppl), 10-15. Copyright

2002 by the Journal of Endocrinological Investigation

Instead of the ableism implied by this model, can we view conditions of perceived frailty and disability simply as being among the expected diversities of human experience?

Instead of “treating,” “rehabilitating,” and “curing” persons seen as frail or disabled, can we celebrate human adaptability and strength?

Can we, as counselors, set aside our “expert” role, to collaborate with our clients as equals?

Some Questions

[Insert YouTube video of disability rights protesters in Washington, DC]

1) Regardless of actual or perceived frailty

and/or disability, people have the

capacity to speak up and act for

themselves.

2) Consumers’ action can generate change:

Rehabilitation Act (9/26/1973) Americans with Disabilities Act

(7/26/1990) Olmstead Decision (6/20/1999) ADA Amendments Act (9/25/2008)

First Thoughts

3) Policy change is not equal to real change.

4) The consumer perspectives of persons

who are frail and/or who experience

disability often differ significantly from

those of:

Family members, Healthcare professionals, Healthcare union representatives, Public-policy analysts, Elected officials, Other able-bodied persons.

[Insert DOL Off My Body posters]

Many researchers (Lavizzo-Mourey, Zinn, and

Taylor, 1992; Brod, Stewart, Sands, & Walton, 1999;

Kane, Kling, Bershadsky, Kane, Giles, Degenholtz,

Liu, & Cutler, 2003; Kane, Kane, Bershadsky, Cutler,

Giles, Liu, 2004; & Natan, 2008) found that

meaningful differences do exist

between nursing home residents’ opinions,

their staff/professionals’ judgments, and

family members’ viewpoints.

With Respect to Nursing Homes

Polivka (2001): 80% of 1994’s public spending for long-term care was on nursing home services.

Mollica et al. (2009): 73% of US Medicaid long-term care spending still was directed to nursing homes.

AARP survey (2009) found 89% of Americans 50 and over prefer long-term care in their own homes.

Leland (2010) explains:

Medicaid mandates require that states offer nursing home care. While community-based services, have no similar regulatory mandate.

Identifying the “Institutional Bias” in US Public Health Policy

[Insert slideshow of Tom Olin’s National Adapt action photographs]

Federal Omnibus Budget Reconciliation Act of 1987.

The founding of the Pioneer Network occurs in 1997 -- a full 10 years after their industry reforms already were Federally mandated!

One year earlier, research already had recognized home & community- based consumer-directed personal assistance services for being a viable alternative to institutional long-term care in a nursing home (Doty, Kasper, & Litvak, 1996).

With Respect to Nursing Homes

[Insert case illustrating a recent example of professional bias]

Counseling Reframed

In Ivey’s (1995) model of psychotherapy as

self-liberation, counselors help clients to:Establish a contextual sense of self.

Understand social power dynamics and move from an external to an internal locus of control.

Build a more reflective self-consciousness and the capacity to redefine systemic issues.

Integrate thought with action, develop systems of support, and reach out to potential allies.

[Insert clinical case illustrating the application of Liberation Therapy]

To Summarize

Our clients, regardless of their frailty

and/or disability, have real preferences and

opinions.

These are not the same as those that we,

as helping professionals, may choose for

them.

Even the most marginalized (and

seemingly functionally impaired) of our

clients have the capacity to speak and act

on their own behalf.

It is only by setting aside our needs to

defend our profession, to feel helpful, and to

feel validated, that counselors can engage

clients authentically as truly valued persons.

Instead of doing for & advocating on

behalf of, counselors can promote clients’

critical thinking about themselves in social

context and help to mobilize their self-

directed action.

Such advocacy “with” our clients does

have a deep tradition in the counseling

profession as represented by the work of Du

Bois, Beers, and Parsons (Kiselica and

Robinson, 2001).

Counselors must remember, as Menacker

(1976) proposed, “Sometimes it is the

system that needs to change and not

the individual.”

[Insert stills from Not Dead Yet’s Times Square advocacy campaign]