Report on Council Feedback

Addition of statement on “behavioral health” to “Stigma and Discrimination” in NAMI’s Public Policy Platform

Final Report – April 25, 2012

Fifty-three individuals responded with feedback.

• 17 percent are state presidents,
• 28.3 percent are executive directors,
• 13.2 percent are Consumer Council members,
• 15.1 percent are Veterans and Military Council members and
• 26.4 percent are not affiliated with any of the four councils.

Leaders were given three options to describe their opinion of the proposed changes: “Support“, “Support with reservations” and “Do not support“.

• 83 percent (44 individuals) said they support the changes,
• 11 percent (6 individuals) said they “support with reservations” and
• 6 percent (3 individuals) did not support the changes.

Comments:

1. Reviewed by our Board. Looks good to us.
   ~ Gay H, executive director, NAMI Pinellas (Fla.)
2. Everything in the revisions represent every activity that NAMI is involved with, which is all improving the lives of all people with mental illness.
   ~Anonymous Consumer Council member
3. I wholeheartedly agree with the proposed revisions. Unfortunately, the military forces need to do so much more to help our active duty members before they become veterans.
   ~Char C, Veterans and Military Council member
4. I am glad the board is going to put this through. I think it should have been done years ago. Good Job!!!!
   ~Tom S
5. Strongly support NAMI stance on excluding the words “behavioral” when referring to individuals with mental disorders.
   ~Anonymous
6. I wholeheartedly agree with the statement on behavioral health!
   ~Barbara C

1. I do have a small issue with the choice verbiage. I know a lot of behaviors and actions are hard to control but I also don’t think we can say that not taking personal responsibility from their actions is correct either. As a consumer I can’t always control my actions but in some cases I can and there are consequences for my actions. On the issue of serving in the military I do think you have to take someone’s mental health situation into consideration. Factors that can cause a person to obtain standing effects from war, or already having a pre-existing condition can be a major factor. I think it can more detrimental to a person serving than not continuing in the military.
   ~Anonymous Consumer Council member
2. I agree 100% with the statements in the policy and the rationale behind it, specifically that the term “behavioral health” is stigmatizing. Virginia is moving towards the term “behavioral health” and it concerns me for the very reasons expressed in the proposed policy revision.
   ~Mira S, executive director, NAMI Virginia
3. I agree 100%.
   ~Linda W
4. Although there is a large segment of those who have mental health conditions who can tie them to biological factors, this excludes many who – develop mental health issues as a result of their environment and trauma. In addition, this focus on biology has been proven to have a more stigmatizing effect on some in that it puts things, in the “medical model” framework. Meaning, there is a “disorder” (another stigmatizing term) that is permanent, leaving an individual “damaged.” The statement can be improved by including positive alternatives. It starts out by stating what they condemn, but what is missing is what they would praise or want to see. (For example, condemning the linkage with violence is appropriate – but there is a need to follow that up with the need for more positive portrayals showing people living well, and living successful lives.) The term “behavioral health” – does not move the conversation forward because it does not offer a more positive alternative. Overall our feeling of the statement is that it sounds overbearing, rather than positive – which is really where we need to go here. My hope for the completion of the statement is that, moving forward, peers would be driving its language and purpose.
   ~Anonymous executive director
5. I think it is time to move beyond the word stigma. Stigma is a very much misunderstood word, and historically a stigma is owned by the person who is different.. the reality of mental illness is much of our community is at best ignorant at worst discriminatory. Lets call it what it is. and not use language that most folks don’t understand, whether intentional or not.
   ~Greg G, executive director, NAMI Lee County (Fla.)
6. I agree with the proposed revisions and the reasoning for making them.
   ~Sherry C
7. Behavioral Health does not describe the situation at all. If a person is mentally ill they are mentally ill.
   ~Jerry F
8. I have always been uncomfortable with the term “Behavioral Health.” Thank you for clarifying why that term is not acceptable.
   ~Deb N, executive director, NAMI Central Iowa
9. I fully agree with the NAMI statement; the term, “behavioral health”, implies that mental illnesses are only behavioral and can be overcome.
   ~Jackie S
10. re: Behavioral Health – Change may hurt more than helps. The meaning that emerged through the years does not indicate that mental illness behavior is willful. Term behavioral health refers to health maintenance and prevention of illness.
    ~Carole J, executive director, NAMI Lake County (Ohio)
11. This is a great and much needed addition to our Public Policy. The term “Behavioral Health” is very stigmatizing and says nothing about mental illness being about moods, thoughts, perceptions etc. We could take it one step further and support the development of another term that more aptly describes these disorders.
    ~Carol C, executive director, NAMI Montgomery County (Pa.)
12. Yeah! We hate the term “behavioral health” and are working on getting all our hospitals to stop using it.
    ~Anonymous executive director
13. Comment from board member: If NAMI is going to condemn the use of Behavioral Health they are obligated to come up with what terms are acceptable.
    ~Anonymous executive director
14. This belief statement is too one-sided identifying only the brain/body perspective of mental illnesses. perhaps a more balanced statement, or softer wording could be used to leave open the fact that diagnosed individuals are responsible to work on recovery and be planful in attending to early warning symptoms to avoid destructive behaviors that we have demonstrated in the past and continue to be responsible for today.
    ~Catherine R, Consumer Council member
15. If this is something that is adopted as a NAMI position, I think that would be wonderful. I would hope that you will notify all NAMI orgs and affiliates so that we can use this policy as a guide for our work. I wonder if this position is adopted, how that will effect the information that NAMI publicizes and the collaborations that NAMI makes with other orgs? Behavioral Health is used currently so widely by other groups. If this is NAMI’s position, will we still promote and support initiatives, trainings, resources, etc that use the BH term? Thanks.
    ~Anonymous executive director
16. Yes!!! Finally! Finally someone speaking out against the term “behavioral health”! Your thoughts on this issue express my thoughts exactly! The use of that term is very stigmatizing and connotes that we consumers “behave” bad.(P.S.- I am a member of Nami and also of Nami Connections, though am not on any council. )
    ~Marsha A
17. Looks good to me.
    ~Anonymous Consumer Council member
18. I support the position. Would be helpful if we had a proposal for those who improperly portray and discriminate against those with mental illness on how they could address the mental illness issue without stigma or discrimination. I must admit that I do not have the words for the proposal, but would be eager to either see what others have proposed or work to create a sound and well considered proposal.
    ~Mike S
19. Behavioral Health for State of Louisiana is still at such a stalemate as for as Stigma. Meaning, treatment by with and for workers not wanting to be involved in Co-Occurring treatment. Federal dollars are and have been discriminating across disabilities, with mental health organizations creating Stigma over said dollars.
    ~Denver N, Consumer Council member

1. We deal with the behavioral stigma with our state legislators. It is time that they, and the general public, learn that mental illness is a disease, not a behavior.
2. ~Margaret Ballard
3. I never liked the term “behavior health.”
   ~Tom W
4. I agree with the statement, but I don’t think this is a battle worth fighting when so many other things are more important and when we can’t do anything to people who continue to use the term, some of whom are our friends.
   ~Anonymous state president
5. The term behavioral health has bothered me ever since it became the new in terminology. Thank you for addressing this and hopefully leading the charge to get rid of it.
   ~Kim S, president, NAMI Oregon
6. Excellent!
   ~Patti Jo S, president, NAMI Wisconsin
7. Stigma, which family members endure, was brought up at one of our recent meetings. Should a statement be made concerning the stigma that family members face?
   ~Anonymous state president
8. NAMI further believes that mental illness is a medical condition, biological in nature, which involves psychological processes such as cognition, emotion, temperament and motivation and which disrupts a person’s thinking, feeling, mood, ability to relate to others and capacity for coping with the ordinary demands of life. NAMI does not favor using the inaccurate term “behavioral health”, as the very term obscures and hinders effective treatment and can add to the stigma and discrimination endured by people living with a mental illness and co-occurring disorders.
   ~Silvia A, executive director, NAMI Puerto Rico
9. Very well done; thank you. I do, however, have two comments: 1) Some times mental illness is used; other times the term mental illnessES is used. Perhaps, the terms should be consistent throughout the document. 2) It is said that NAMI “believes…”. I would respectfully suggest using a stronger word such as CONVINCED.
   ~Sherry G, president, NAMI New York State
10. The stigma and nonsense must stop; lives are being lost because of it….mine almost several times. I am a former missionary to Guatemala for twenty years and showed no signs of Bipolar until an MA at University of Penn. I finished the MA and returned to the field. I ended up in Wi by accident but have become “manic” (fine) in my advocacy.
    ~Julie S, chair, Wisconsin Consumer Council
11. This is well put together and seems like a lot of time and effort was put into this to get the wording just right. It’s clear concise and should make sense to any one that is reading this.
    ~ James B, Veterans and Military Council member
12. I do not think that ‘primarily biological’ is correct; rather it be worded ‘primarily biological and environmental’.
    ~Kyle L, Veterans and Military Council member