the advocacy monitor

Independent Living News & Policy from the National Council on Independent Living

Action Alert: Call Your Representative to Tell Them to Oppose H.R. 2646

The bill is still bad for people with disabilities.

Representative Murphy, the bill’s author, called H.R. 2646 the “Helping Families in Mental Health Crisis Act of 2015.” Others know it as the “Murphy bill.” Last week the House Energy and Commerce (E&C) Committee amended it and voted it out of committee unanimously. View the markup and the vote.

As we’ve discussed in previous alerts, the passage of this bill would have dire consequences for people with psychiatric disabilities. Misled by dangerous assumptions and false media portrayals of those with psychiatric disabilities, supporters of this bill believe they are advocating for improved access to services and protection from violence.

In reality, this bill would take away basic civil and human rights of people with disabilities. People with psychiatric diagnoses are much more likely to be victims than perpetrators of violence. They are no more likely to be dangerous than their peers without psychiatric diagnoses. Regardless of these facts, proponents of this bill seem to believe that those with psychiatric diagnosis truly are different and less capable than their peers and should be treated as such.

Perhaps most importantly, this bill limits health privacy under the HIPAA rules. Section 401 of the Manager’s Amendment would establish a “Sense of Congress.” This section would write a controversial definition into law. There is substantial research showing that people diagnosed with mental illness are able to make reasonable decisions about their care as do people with other chronic health conditions. The bill ignores this evidence, limiting the rights of people with psychiatric disabilities to privacy and to control their own care.

Section 404 requires the Secretary of Health and Human Services to promulgate new HIPAA privacy regulations. This creates the risk that more discrimination will be written into law consistently with the “Sense of Congress.” 

Together, these provisions justify discrimination and ignore one of the ugly truths of mental health treatment. Namely, most people with psychiatric disability have experienced trauma, often childhood trauma and often at the hands of family members. Granting family members rights to information about health care will cause harm to many people with psychiatric disabilities. We must oppose this.

In addition to the HIPPA privacy provisions, this bill contains other dangerous provisions. It would:

  • Promote greater reliance on hospitals and other institutions over community supports and
  • Bribe states to take away the right to decide their own health care for people with psychiatric disability through an “assisted outpatient treatment” grant program.

The term “assisted outpatient treatment” (AOT) is like calling robbery “assisted wealth redistribution” and is more appropriately called involuntary outpatient treatment (“IOT”). IOT has been studied extensively. It has not been shown to be effective without increased access to services.

H.R. 2646 also creates new bureaucracy within the Substance Abuse and Mental Health Services Administration (SAMHSA). A new Assistant Secretary must be a doctor. Other changes threaten effective programs such as peer support and limit the role for consumers in mental health and substance use policy and programs.

Instead of encouraging mental health treatment, the discrimination this bill requires would encourage people to avoid treatment. The only sure way to avoid losing rights is to stay out of the system.

Though some of the most harmful provisions in previous versions of this bill have been softened, it is still dangerous and discriminatory. This much we know is true: Passing this bill would undo many years of disability advocacy successes that we as a community have fought so hard to achieve by dehumanizing people with psychiatric diagnoses. Please call your Representative! Ask them to oppose H.R. 2646; it is still bad for people with disabilities.

Comments

  1. Pamela Soucy says:

    People diagnosed with a physical / mental disability often gets disrespect an no respect / dignity. People need somehting on there schedule to feel self confident

  2. Carol Eshleman says:

    I would like to read the bill in it’s entirety. It sounds as though there may be some problems, but it also sounds as though it may address some serious problems for many individuals and their families, which are necessary to address. It also sounds as though you are seriously out of touch with the realities that many people are facing today. Yes, many people with disabilities have suffered trauma and/or abuse. Yes, it has sometimes occurred at the hands of family members. However, in the vast majority of cases, the trauma, and the abuse, whether verbal, emotional, sexual, physical, etc. has occurred at the hands of people outside of the family, sometimes strangers, but very often teachers, caseworkers, other clients or staff in treatment programs, partial or full hospitialization programs, etc,and if the parents would have been able to have more input, knowledge, or power, it may have been prevented in the first place. As a parent, professional, and volunteer advocate, I have seen this countless times, and I don’t think that there are accurate statistics being compiled!
    I also believe that those who are in the midst of addictions are not able to make appropriate decisions for their care in many instances, and parents currently lack the ability to have knowledge or involvement. I think that we can all agree that a big problem in this area is a lack of fully funded treatment programs, especially residential programs, and especially those for women with children. I think that rather than focusing on our differences in opinions, it may be best to focus on the goals which we have in common.
    I am also aware of the high rates of suicides, and again feel that more parental input in these issues may lead to better outcomes (i.e. lower suicide rates)
    Another issue is the prevalence of violent, aggressive behaviour in people with autism, as well as self injurious behaviours in this group. I think that the general public, as well as many professionals are vastly unaware of the magnitude of this issue. First, because it is often impossible for those who are the most volatile to get out into the public eye, and many are non-verbal. Second, many of the parents do not discuss this with other parents, or with teachers, or sometimes, even with a therapist, because there child is higher functioning in some ways, and they see a tremendous benefit to their child in having playmates, being mainstreamed in regular ed classes, being involved in regular activities, and they don’t want other parents or teachers to keep their neurotypical children away from those on the autism spectrum, due to fear. Third, the school, hospital, day programs, etc. don’t want bad publicity, so they try to cover up problems, the police don’t view the child with a disability as a reliable witness, and often they may have limited or no speech, so even though parents may know that something happened, it may be difficult to get adequate details. Add to this, that teachers and others who are mandated reporters often don’t have a thorough understanding of the types of problems which their students or clients may have, and most of their clients or students lack appropriate social understanding, as well as filter, so they are apt to do and say some things which are very different from their neurotypical students, raising red flags in their minds. Family income is often much lower, often poverty level, due to the need for caregiving instead of working, and due to out of pocket expenses due to the disability, adding another layer of issues. Also, when a child is abused or molested in any setting, including a hospital, children and youth do an investigation, to determine if the child is safe. It includes talking with professionals, parents, teachers, etc,, just as it would if a parent was the abuser. Most of those people have been brought up to believe that this wouldn’t happen, unless there is a problem. Privacy regs prohibit discussion of what triggered the investigation. Often parents are aware of the abuse, and have reported if to police, counselors, etc., but are unaware that this investigation will be happening, and will feel victimized as a family all over again…and the suspicion from others who have been asked questions, or provided information will cause every future comment, interaction, action, etc. to be questioned, and placed under a microscope, greatly increasing the chances of another call to the child abuse line, and another investigation.
    And, lastly, there is a growing problem of people with ID (formerly known as MR), autism, or other disabilities being involved in the juvenile justice system, or as adults, being in the adult jail, prison, parole systems.
    While there are many good, caring advocates and professionals, there are also many who haven’t raised a child with a disability, nor do they have a disability, and they truly don’t have a clue as to how much harm they can impose upon a family and an individual with autism, ID, or other issues, by their ideas and beliefs, which are based in idealistic notions, rather than reality.

    • Pamela Soucy says:

      Just because of a mental health diagnosis doesn’t mean isolate / seclude in lock down at psych hospital should be helping /empowering to live in community of their choosing not poverty mentality
      Activity is key to recovery

Speak Your Mind

*