What Families Want Congress to Know

Pete Earley, awarding winning author and and internationally known mental health advocate has asked families to to share input on "What Should I Tell Congress?"

by Pete Earley 

Read more here:

http://www.peteearley.com/2013/03/01/what-should-i-tell-congress/

I generally publish a blog from my files each Friday. However, I have been invited to participate in a forum entitled “After Newtown: A National Conversation on Violence and Severe Mental Illness” on March 5th, before an investigative subcommittee of the  U.S. House Committee on Energy and Commerce.

I mentioned in last Monday’s blog that Reps. Tim Murphy (R-Pa.) and Diana DeGette (D-Co.) are holding the forum and I’m thrilled to report that Pat and Debbie Milam also have been invited to give testimony. I wrote about the death of their son, Matthew,  in a blog entitled: A Father Grieves: No One Listened to Parents.

Along with my formal invitation came a list of potential questions that might be asked at the forum, which will begin at 10 a.m. in Room 2123 of the Rayburn House Office Building in Washington D.C. and is open to the public.  I don’t know if it will be covered by C-Span but hope it will.

Okay, now is your chance to sound off.  Here are the questions:

Below are my responses to Pete:

1. In what ways is mental illness more — or less — treatable than other serious medical conditions?
 

Mental illnesses are very treatable, but both education and resources for the individual and their family, should be an important requirement of a treatment plan — not just pills. Also, ruling out other deficits, diet deficiencies, hormonal imbalances, etc., should be required testing before a psychiatric diagnoses is determined. Historically, few tests are required before a person is diagnosed.

Additionally, not all mental illnesses are the same. An individual who has become depressed or anxious, after experiencing a traumatic event may not require the same multidisciplinary outpatient supports, as an individual who is acutely psychotic, has lost touch with reality and believes aliens are about to kill them or their family members.

Hospitals must recognize that a discharge plan should be more than an appointment to see an outpatient provider every 3 months and a prescription for pills! Just as in heart disease — diet, exercise, lifestyle changes are needed to recover, so should be solutions for an individuals with severe and persistent mental illness, SPMI. In other words, individuals with a history of SPMI, who are too sick to recognize they are sick, shouldn't be categorized the same.

2. What are the greatest obstacles to seeking treatment for individuals suffering from mental illness and their families?

HIPPA, lack of assisted outpatient treatment, (AOT) laws and a mental health system that was never designed to work! The current system is beyond broken. Families should not be forced to turn to the DOJ and criminalize their young sons/daughters in order to obtain a band aide — which might be no more than 2 weeks of inpatient care or worse, a judge's order to seek treatment for an illness they may not realize they have — through probation. "Would we force a patient with cancer or Alzheimer's into jail first, attempting to teach them to not have their illness? This approach is essentially what families face across the US"!  It should be illegal for a families and providers to turn our backs, due to civil liberties — forcing the sickest to become homeless.

3. Among individuals with untreated and severe mental illness, when, if at all, is violence — directed at the self or others — most likely?

When resources and supports aren't available. Violence occurs when individuals with 'untreated' SPMI become desperate due to hunger, lack of basic needs or inability to be successful in the community. When their ability to think logically becomes impaired, violence can be triggered quickly and can be unpredictable. Additionally, individuals with untreated SPMI may seek revenge to hurt a family member, who isn't able to help their loved one carry out their delusions or other psychotic beliefs. Some family members become 'trapped in their fears' — if they attempt to have their loved one involuntary hospitalized, they will become victimized or hurt themselves, if their loved one isn't held long enough to stabilize. Which is often the case. Legal statues for inpatient commitment laws can force family members into horrific situations and can lead to deadly consequences. Treatment Advocacy Center has a preventable tragedy data base for these families — this alone should speak volumes. Why hasn't congress listened before now?

4. What is the record of federal state, and local programs geared towards improving health outcomes among individuals with severe mental illness?

Preventive programs for 'children at risk', have produced positive outcomes in our state, (Kentucky). However, the track record for adult programs for individuals with SPMI are underfunded, ineffective or misused — in comparisons to programs designed for individuals with developmental/intellectual disabilities. Those who recognize they are ill and are able to request assistance, become an active participant in their own recovery and can utilized programs easier. However, advocates for freedom and choice, too often leave out the other 40% who lack insight to their illness.

Sometimes funds from federal grants become tied up administrative or marketing cost for awareness campaigns, etc., than actually assisting individuals and their families who have the most severe cases. It seems grants actually create conflict among advocacy groups, instead of encouraging groups to work collectively. Additionally, navigating state or federal programs — can be a draining and full time job for a caregiver, which result in health problems, lost income or jobs. This creates hardships on the entire family, resulting in additional drains on the welfare or social security system.

5. What are the most effective federal, state, and local programs for prevention and early detection of severe mental illness in children and young adults?  

Programs that provide wrap-around services for the entire family. Programing shouldn't stop for the family, after their children with SPMI aged out of the system at 18! Adequate transitioning is needed between the youth and adult systems. HIPPA Laws have become a huge barrier for families attempting to help their young adults who have SPMI.

6. How can federal programs be improved to reduce barriers to access and improve outcomes for individuals with severe mental illness?

A federal mandated Assisted Outpatient Treatment, (AOT) law should require individuals who are too sick to know they need help, (anosognosia) and often end up in the revolving door of homelessness and frequent incarcerations. Families should be considered part of the solution of the over all treatment plan for both inpatient and outpatient programing. Frequently, family members are left to pick up the pieces and support our very ill family member, yet are rarely considered in developing the treatment plan. HIPPA is to blame in most cases.