Rewire Article: Advocates Say Bill to Address Gaps in Mental Health Care Would Do More Harm Than Good

Article over at Rewire about H.R. 2646 (“Murphy Bill”):

Advocates say that U.S. Rep. Tim Murphy’s “Helping Families in Mental Health Crisis Act,” purported to help address gaps in care, is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.

Topics include privacy concerns, the difficulties patients face when trying to have their concerns taken seriously, the need for trauma-informed care, and the implications for the LGBTQ community.

Great quotations from Victoria M. Rodríguez-Roldán, JD, director of the Trans/GNC Justice Project at the National LGBTQ Task Force and #RealMHChange’s own Leah Harris.

The article is worth reading in full.

H.R. 2646 Passes out of Committee

On June 15th, H.R. 2646 (“Murphy Bill”) passed out of the House Energy and Commerce Committee.

As the Autistic Self Advocacy Network (ASAN) points out, this is cause for concern:

Despite recent revisions, H.R. 2646 continues to focus on interventions that isolate and stigmatize people with mental health disabilities. It was not only written without significant participation by people with mental health disabilities but also would exclude people with mental health disabilities from positions of leadership in mental health programs.

  • H.R. 2646 would create new administrative burdens for home health care and personal attendant services for people with disabilities.
  • H.R. 2646 would subsidize long-term institutionalization of children and young adults.
  • H.R. 2646 would not ensure that people with psychiatric disabilities are represented in the programs that it would authorize.
  • H.R. 2646 promotes outdated ideas about the capacity of individuals with mental health disabilitiesincluding its apparent promotion of plenary guardianship for individuals with mental health disabilitiesand makes no mention of available alternatives to guardianship, such as supported decision-making.
  • The draft bill would urge the Department of Health and Human Services to revisit (or “clarify”) its existing HIPAA regulations in a way that could potentially expand access to protected health information without the consent of a person with a mental health disability.

Read the full press release here.

Call to Action: HR 2646 Markup This Week

TIME SENSITIVE! Call or write before 5:00 pm on Tuesday, June 14, 2016.

The most current draft of the Murphy Bill, HB 2646, will be addressed by the House Energy and Commerce (E&C) Committee next Wednesday, June 15, 2016.

If your House representative is on the E&C Committee CALL THEIR HOME OFFICE by the end of Tuesday, June 14. (Instructions on how to find your Rep and who to call are at the end of the announcement.)

WHETHER YOU HAVE A REP ON THE COMMITTEE OR NOT, please call the Washington offices of Chairman Fred Upton and Ranking Member Frank Pallone. Here is their contact information:

Fred Upton (R, MI), Chairman
TEL: 202-225-3761
http://upton.house.gov/contact/zipauth.htm

Frank Pallone, Jr. (D, NJ), Ranking Member
TEL: 202-225-4671
https://palloneforms.house.gov/contact/email

LEAVE A MESSAGE stating you are strongly opposed to Murphy Bill HB 2646 and you want them to vote against it on June 15, 2016.

Below are the key points for opposing the bill. More details are at our website.

Press release from NCMHR on this proposed legislation.

The National Coalition for Mental Health Recovery is strongly opposed to HR 2646, the Helping Families in Mental Health Crisis Act of 2016, for the following reasons:

Continues to weaken the Substance Abuse and Mental Health Services Administration by creation of unnecessary oversight by an Assistant Secretary for Mental Health. SAMHSA has been indispensable in supporting the recovery of individuals with mental health conditions.

Would violate civil rights by authorizing new funding for assisted outpatient treatment, despite the lack of evidence that mandated outpatient treatment is effective.

Would expand Medicaid funding for institutions, rather than putting the money into evidence-based services in the community, as has been mandated by the Supreme Court’s Olmstead decision.

OVERALL REACTION
The crisis in mental health care has been painted as a problem of “undeserved” rights. It is, in fact, a problem of grossly inadequate resources that are poorly allocated. Consumer-driven services in the community complement traditional mental health programs with highly effective outcomes that are significantly less expensive than other forms of community care. We recommend language and funding for peer support specialist grant programs and other consumer-driven supports.

More than 50 years after deinstitutionalization, mental health systems across the country are still unable to provide the appropriate care in the community that was promised long ago. Time and again, research has proven that the public perception of the relative “dangerousness” of people with mental health conditions is unfounded. Sensationalized, distorted media coverage and the sustained influence of some stakeholders have fueled arguments for forced treatment and an overly medicalized system of care. The march toward re-institutionalization and coercive care is abhorrent. Having a mental health condition does not constitute a life sentence to poverty, marginalization, aberrant behavior or an inability to become a fully functioning citizen who can contribute meaningfully to his/her community. We know that recovery is possible because we are the evidence.
*****

Who needs to be called? Members of the House Energy and Commerce Committee should be called by their constituents:
https://energycommerce.house.gov/about-ec/energy-commerce-committee-members

Not sure who your representative is? Go to this link and type in your zip code:
http://www.house.gov/representatives/find/

An icon for your representative will appear, and you should be able to locate their contact information. If you prefer email, use the address provided on your representative’s page.

However, THE BEST IMPACT will come from calls to the home district offices. The staff at the home offices will communicate with the DC staff accordingly.

Don’t see your representative on the Energy and Commerce Committee? That’s okay, you can still help by calling the Washington, DC offices of the Chairman and Ranking Member and sharing your views:

Chairman Fred Upton (R, MI)
TEL: 202-225-3761
http://upton.house.gov/contact/zipauth.htm

Ranking Member Frank Pallone, Jr. (D, NJ)
TEL: 202-225-4671
https://palloneforms.house.gov/contact/email

TIME SENSITIVE! Call or write before 5:00 pm on Tuesday, June 14, 2016.

LGBT Organizations Oppose the Murphy Bill (H.R. 2646)!

Rainbow_flag_breezeFriends in both the disability and the LGBTQ advocacy communities:

Below is the following statement sent today to members of Congress on behalf of various LGBTQ organizations against H.R. 2646, Helping Families in Mental Health Crisis Act (the Murphy Bill).

January 28, 2016

To Whom It May Concern:

On behalf of the undersigned organizations, which advocate on behalf of lesbian, gay, bisexual and transgender (LGBT) communities, we wish to express our opposition against H.R. 2646, the Helping Families in Mental Health Crisis Act. While our nation’s mental health system is in dire need of reform, H.R. 2646 is not the answer. Although a few of the proposed reforms in this bill have the potential to positively impact the lives of some individuals with psychiatric disabilities and should be incorporated into alternative legislation, many of the current bill’s provisions would cause irreparable harm to both our mental health system and to many Americans with psychiatric disabilities—including many LGBT individuals. LGBT individuals are disproportionately affected by mental illness, face pervasive discrimination in health care settings and can experience unique vulnerabilities when denied privacy or decision-making power in their treatments.

LGBT individuals may be disproportionately impacted by H.R. 2646.

In the face of systemic discrimination, stigma and lack of access to culturally competent health care, the LGBT community experiences significant health disparities, including high rates of mental illness. LGBT individuals are more likely to experience depression, anxiety and suicidal behavior and ideation. For example, the 2011 National Transgender Discrimination Survey reported that 41 percent of transgender respondents had previously attempted suicide—a stark contrast to the national suicide attempt rate of 1.6 percent. Studies have also consistently shown that lesbian, gay and bisexual adults face an increased risk of suicidal ideation and attempts, with their lifetime prevalence of suicide attempt estimated to be between two and four times higher than that of their heterosexual counterparts. These indications of mental health outcomes suggest that LGBT people face higher rates of certain mental health conditions, and may therefore be disproportionately impacted by H.R. 2646.

As currently written, this bill could also apply to a significant number of transgender people regardless of whether they are experiencing an ongoing mental health crisis. H.R. 2646 applies to “individuals with serious mental illness,” defined as individuals whose conditions meet diagnostic criteria under the DSM-5 and substantially interfere with a major life activity. A natural reading of this definition would include gender dysphoria, a DSM-5 diagnosis applicable to many (though not all) transgender people, when it is severe enough to interfere with a major life activity. We are concerned that the bill, if enacted, could be interpreted to authorize the infringement of transgender individuals’ medical privacy or decision-making power based on their diagnosis of gender dysphoria, or allow health care providers to disclose treatments connected with gender dysphoria (such as hormone therapy, surgical procedures or changes in social roles) regardless of whether they are directly relevant to an ongoing mental health crisis.

Infringements on privacy and decision-making power may endanger the wellbeing of LGBT individuals.

H.R. 2646 would create a special exception to the confidentiality protections established by HIPAA and FERPA that singles out people with psychiatric and developmental disabilities. The bill would exclude such individuals by authorizing health care providers to disclose critical information about an individual’s diagnosis, treatment plan and medications to family members, with almost no meaningful and objective safeguards against abuse or misapplication of the rule. Under this bill, an individual would have no right to identify the appropriate caregivers who should be involved in their care or choose which family members are given access to their medical information.

For many LGBT individuals, this erosion of privacy can have counterproductive and dangerous consequences. While the number of supportive families has steadily grown, family members of many LGBT individuals continue to struggle to understand or accept their sexual orientation or gender identity. For example, 57% of transgender respondents in a national study reported experiencing family rejection because of their gender identity.7 Family rejection can exacerbate an individual’s mental health concerns and place them in harmful conditions: they may have family cut off contact with them, be kicked out of their homes, be cut off from financial support, or be subjected to abuse and violence.

Consequently, many LGBT individuals choose to delay coming out to their families or avoid coming out at all, and may, for example, enter into same-sex relationships or begin transitioning without their family’s knowledge. This bill could potentially strip many LGBT individuals of the power to decide whether, when or how to come out to their families. For example, the bill could allow a mental health professional or paraprofessional to disclose to unsupportive family members a transgender individual’s diagnosis of gender dysphoria, their treatment plan, and any related medications, such as hormone therapy, that they take to treat their gender dysphoria. Disclosing this information against a transgender individual’s consent can wreak havoc on their lives at a time when they are particularly vulnerable and empower misguided or even abusive attempts by their families to interfere with their transition-related care.

H.R. 2646 can force LGBT people into treatment that is ineffective, harmful or discriminatory.

H.R. 2646 would condition huge block grants upon states enacting particular types of Involuntary Outpatient Commitment (IOC) statutes, under which a court can order an individual to follow a judge’s treatment plan, such as taking specific medications, attending medical appointments or refraining from associating with certain individuals.

We believe that the expanded reliance on coercive treatment is an inappropriate solution to the problems in our mental health system, in part because it is grounded in the assumption that available mental health services are likely to be nondiscriminatory, affirming and effective—an assumption that does not hold true for much of the LGBT community. Many LGBT people struggle to find affirming mental health care that understands their unique needs and respects their gender identities or sexual orientations. For example, transgender patients frequently find that mental health providers lack a basic understanding of needs related to gender dysphoria and fail to provide them with the care that they need.9 In many cases, mental health professionals have reacted to their patients’ gender identity or sexual orientation with hostility, turned them away, subjected them to harassment and abuse, and even traumatized them through conversion therapy or other discredited attempts to change their gender identity. The expansion of involuntary outpatient commitment may be particularly harmful for LGBT people of color: studies suggest that people of color are disproportionately admitted to IOC programs, and face a range of barriers to culturally competent and nondiscriminatory care. This problem may be compounded by the fact that many IOC statutes rely on police to enforce court orders and lead to more contacts with the criminal justice system.

When so much of the available care is based on an insufficient understanding of the needs of LGBT individuals, or is discriminatory or actually harmful, it is critical that LGBT people have as much control as possible over their mental health treatment and retain the ability to opt out of hostile or unsafe therapy settings. With few effective safeguards to protect vulnerable individuals in the mental health system, programs that strip LGBT people of control over their health care are often unnecessary, ineffective and potentially dangerous.

H.R. 2646 limits advocacy and research critical for LGBT people.

H.R. 2646 would hamstring the civil rights and nondiscrimination protections of the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program, the largest network of legal service providers for Americans with disabilities. PAIMI currently addresses thousands of complaints each year about abuse, neglect and civil rights violations in the provision of mental health care. This bill would require PAIMI agencies to focus exclusively on protecting individuals from abuse and neglect and prevent them from investigating and seeking remedies for civil rights violations. In light of the rampant discrimination and civil rights violations that LGBT and other individuals with disabilities still face in medical settings, this severe restriction on PAIMI’s jurisdiction can deny them access to advocacy services essential to their ability to obtain safe and lawful treatment.

H.R. 2646 further intends to eliminate SAMHSA, which has been an important resource for advancing the behavioral health and wellness of individuals with mental illness, including the LGBT population, for over 24 years. By replacing SAMHSA with an Assistant Secretary for Mental Health and Substance Use Disorders, a portfolio with a dramatically narrower mandate, H.R. 2646 would end support for many public health initiatives addressing the full range of LGBT health needs and concerns.

We applaud Members of Congress for their recognition of the urgent need to reform our mental health system: millions of Americans are living with mental health conditions without access to competent, nonstigmatizing and affordable care. H.R. 2646, however, would do more harm than good. It perpetuates stigmatizing stereotypes about people with psychiatric and developmental disabilities and would strip them of civil rights protections for which disability justice advocates have fought for decades, with particularly dangerous consequences for vulnerable populations such as LGBT communities.

The undersigned organizations therefore stand with numerous other social justice organizations to oppose H.R. 2646, and we encourage you to join a growing number of your colleagues in doing the same.

We welcome the opportunity to discuss the impact of H.R. 2646 on members of the LGBT community. For more information, please contact:

Victoria M. Rodríguez-Roldán
Policy Counsel and Trans/GNC Project Director,
National LGBTQ Task Force Action Fund

Ma’ayan Anafi
Policy Counsel, National Center for Transgender Equality

Sincerely,

American Civil Liberties Union
BiNet USA
Gay & Lesbian Advocates & Defenders
National Black Justice Center
National Center for Lesbian Rights
National Center for Transgender Equality
National LGBTQ Task Force Action Fund
National Queer Asian Pacific Islander Alliance
Queerability
Transgender Law Center

ACTION ALERT: “The Mermaid” Film Promotes Stereotypes and Force

sdavidowBy Sera Davidow

It’s Murphy Bill season, and every last article, video and sound bite that’s circling counts in the court of public opinion. Tim Murphy reportedly has admitted that manipulation of information for public consumption is a necessary evil in order to push his agenda. Apparently he feels his self-righteous cause justifies his means. But, the swirl of misguided media leaves the rest of us needing to be all the more attentive to the messages flying around.

Unfortunately, Murphy has plenty of unwitting subjects to further his desired message, and one of them is Italome Ohikhuare who wrote and produced ‘The Mermaid’. ‘The Mermaid’ is a about a young woman and her relationship with her brother who is diagnosed with schizophrenia. It is reportedly based on Italome’s real-life experiences with her real-life brother, for whom she claims this piece is a ‘gift’.

The film is an unfortunate 13-minute advertisement for Involuntary Outpatient Commitment (aka Assisted Outpatient Treatment, AOT, or Murphy’s favorite pet), that attempts to paint itself as a “moving love story about a young woman torn between her blossoming relationship with her boyfriend and her chaotic but endearing relationship with her brother.”

‘Love’ is the furthest thing from my mind as I watch the main character (Sirah) interacting with her boyfriend (Jay) who’s attempting to manipulate her into bed, or her violent and erratic brother (Deji) who she screams repeatedly “just needs his pills.” In fact, this film is troubling at many levels both from a standpoint of racism and psychiatric oppression. Here’s a brief list of the whys:

  • The film re-enforces dangerous racial stereotypes: Deji is a young black man *wearing a hoodie* and is repeatedly painted as violent and frightening, particularly toward Jay (who is a white man). There is little that could make this film any less racially sensitive given today’s climate.
  • Except this: Jay (the white, professionally dressed lawyer boyfriend who is physically attacked by Deji) rescues him from drowning at the end of the film.
  • The film promotes significant misunderstandings about how psychiatric drugs work in both the short and long-term: Sirah screams (more than once) that Deji will be alright if he just gets his pills. However, unless we’re speaking of tranquilizer darts (or other heavy sedatives) and unless we’re defining ‘alright’ as ‘incapacitated by sleep’, there is no pill that would have such immediate effect. Furthermore, Sirah’s screechy insistence re-enforces the erroneous belief that psychotropics are the key, ignoring all the research that now suggests that they often lead to little improvement and not infrequently can make things worse.
  • The film promotes the idea that people with psychiatric diagnoses like schizophrenia are scary and dangerous: Although there’s little real-word research to suggest that people with psychiatric diagnoses are at greater risk of violence than the average person, Deji has his hands around Jay’s throat three times within the first five minutes of the Mermaid. This is followed immediately by Jay yelling that he needs to be “Baker Acted” and suggesting that he’s going to “kill someone”.
  • The film promotes hopelessness and perpetuates the idea that people with diagnoses like schizophrenia will forever be tormented and dangerous: Hopeless statistics and propaganda about the schizophrenia diagnosis are tacked on to the end of the film, and the promotional website spouts this little gem at the conclusion of its ‘about’ section: “But the most unexpected moment comes at the end of the film, when they’re all confronted with…the tragic reality that this story, just like schizophrenia, can’t have a happy ending.” (See the film’s full website here: http://www.themermaidfilm.com )
  • The film perpetuates the idea that there’s psychiatric drugs and hospitalization or there’s nothing, and that force is an inevitability: Apparently, Sirah’s been trying to support Deji in almost complete isolation, and the film (however unintentionally) paints that and the forced hospitalization he experiences by the end not as two extremes on a fairly broad spectrum, but as point A to point B on a two-point scale. In fact, her boyfriend reassures her that she “did the right thing,” and had “no other choice”. The truth is, though, that there are many choices in how to support people who are going through extreme states, and great harm done through the use of force. Meanwhile, the use of force, while often an act of desperation by otherwise decent people, represents a failure of the system, and not an inevitability of some hopeless ‘brain disease’. This film does a real disservice by failing to represent any of that.
  • As an added bonus, it paints women as shrill and helpless sex objects: Jay seems to be angling to get Sirah into bed at the start of the film. By its conclusion, as Sirah is once again helplessly screaming, Jay must come to her rescue not once (when her brother is drowning), but twice (when she’s crying inconsolably and invites him to spend the night as he’d clearly wanted to do right from the start). Sure, she also has a moment (after Deji is rescued from the ocean by Jay) where she slaps and pins her brother to the ground, but that moment is so unbelievable it’s just plain bizarre.

‘The Mermaid’ is currently being promoted via the Mental health Channel (MHC), as the winner of the Jury Award in their Film Festival. I recently spoke with Managing Director, Harry Lynch, regarding my concerns about the film (among other elements of MHC), and although he said he heard some of my concerns, he didn’t feel that they could take action to remove the film unless they heard from more than just me that it was problematic.

I am hoping that you will hear his words as a call to action and ask MHC directly to remove this film.

Remember, it all counts. Every message going out to the public counts. The messages put forth in ‘The Mermaid’ count (and not in a good way). And, if Harry Lynch speaks truth, so does your voice.

I hope you’ll use it.

You can see ‘The Mermaid’ here: https://vimeo.com/139278058

You can reach the Mental Health Channel here: mhc@arcosfilms.com

Sera Davidow is a mother, an advocate, an activist and a filmmaker who devotes much of her time to the Western Massachusetts Recovery Learning Community (http://www.westernmassrlc.org). She entered the mental health system as a teenager and cites “non-compliance” as part of what saved her from a very different path that surely would not have included the freedom she now enjoys from all psychiatric labels and medications.

ACTION ALERT: #HousingNotAsylums! Monday, December 14

On Monday December 14, at 11:00 AM Eastern Time, the National Alliance on Mental Illness (NAMI), the American Psychiatric Association (APA), and the National Association of Psychiatric Health Systems (NAPHS) will host a briefing on Capitol Hill entitled “Nowhere to Go: How Restrictions on Psychiatric Beds Harm People with Serious Mental Illness.” The topic of the briefing is repealing the IMD exclusion in Medicaid.

What is the IMD Exclusion?

The “Helping Families in Mental Health Crisis Act” would largely repeal a Medicaid rule that prohibits federal Medicaid funds from going to individuals under 65 served in “institutions for mental diseases.” These institutions are facilities of more than 16 beds that primarily serve individuals diagnosed with mental illnesses. The IMD rule applies only to freestanding psychiatric facilities. Psychiatric inpatient care in general hospitals is covered by the Medicaid program. Psychiatric inpatient services for children 21 and under are also covered under the Medicaid program.

What’s wrong with hospital beds? Shouldn’t Medicaid pay for this?

In the 1960s, we shut down many mental institutions because they were breeding grounds for neglect, abuse, and death. Sadly, the “One Flew Over the Cuckoo’s Nest” days are not over. Chilling reports coming out of Western State Hospital in Washington State as well as Florida state mental hospitals show that large institutions can be unsafe places for people with psychiatric disabilities. The Service Employees International Union (SEIU), has created a website “Behind Closed Doors” documenting abuses by Universal Health Services Inc. (UHS), America’s largest provider of inpatient behavioral health care. If we repeal the IMD exclusion, we can expect more of these horrific reports.

The IMD rule, which has been in effect since the beginning of the Medicaid program, was designed to limit the warehousing of people with mental health disabilities in psychiatric institutions. This Medicaid rule was enacted two years after the 1963 Community Mental Health Centers Act, at a time when the country had begun to shift away from large psychiatric institutions and develop community-based mental health services. It has been an important incentive for mental health systems to develop community services rather than relying solely on institutional care.

Who would benefit from repeal of the IMD exclusion?

Definitely not people diagnosed with mental health conditions, their families, or people who work in psychiatric hospitals. Who WOULD benefit is the National Association of Psychiatric Health Systems (NAPHS), who is a co-sponsor of this briefing and whose leadership is composed of the top brass in the psychiatric institution industry, including UHS. They would stand to gain billions from this repeal, and are lobbying hard to have it passed.

So if repealing the IMD Exclusion isn’t the answer, what is?

The root of the problem with the mental health system is the lack of comprehensive community-based services that help prevent crisis in the first place. Too often, people cannot obtain services until they are in crisis. Then, they are usually taken to a general hospital (usually an emergency room) or have an encounter with law enforcement. After their hospitalization or involvement with the criminal justice system (often including incarceration), they return to the community without needed services. The response to this vicious cycle is not to build more inpatient beds or to keep incarcerating people, but instead to invest in intensive community-based services that avoid and de-escalate crises, prevent hospitalization, and help people returning to the community to get the support they need. The mental health system needs more funding for services such as mobile crisis teams, crisis respite houses, family and peer supports, and supportive housing — not more institutions. According to the Corporation for Supportive Housing, “cost studies in six different states and cities found that supportive housing results in tenants’ decreased use of homeless shelters, hospitals, emergency rooms, jails and prisons.”

What you can do:

Starting at 11:00 AM on Monday, December 14, Tweet to your member of Congress or post to their Facebook wall and tell them #HousingNotAsylums!

Our Twitter accounts: @RealMHChange; @NDRNAdvocates

Sponsors’ Twitter accounts: @APAPsychiatric; @NAMICommunicate

Use HashTags: #RealMHChange #protectPAIMI #HousingNotAsylums

Sample Tweets:

  • We need #HousingNotAsylums! Community not institutions!
  • Repealing the IMD exclusion will line corporate pockets, while our communities stay impoverished.
  • #HR2646 is a rollback to One Flew Over the Cuckoo’s Nest, NOT the #realmhchange we need! #housingnotasylums
  • #RealMHChange is crisis respite services that help people and save money — NOT #HR2646
  • “I’d rather die than go back to the hospital.” Crisis respite houses are a great alternative. http://bit.ly/1jV3ukZ
  • Spend $$ on community-based #mentalhealth services that work, not institutions. #realmhchange
  • Crisis respites save lives and dollars! http://www.gjcpp.org/pdfs/2013-007-final-20130930.pdf #housingnotasylums
  • Move #mentalhealth services closer to the community, not farther away into hospitals. #HousingNotAsylums
  • #HR2646 promotes hospitalization for #mentalhealth needs best cared for in the community. #RealMHChange
  • Over-reliance on hospitalization is expensive & less effective than community-based mental health care. #RealMHChange
  • #RealMHChange is funding prevention of crisis. #HR2646 would fuel a crisis based system.