May 6, 2019
Disability Policy Consortium Weekly Update

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One of the strengths of the Disability Policy Consortium is the amazing talent we are able to bring together in our common struggle for freedom and acceptance.  That talent is on full display this week in our newsletter.  First, in honor of Mental Health Awareness Month, we have an editorial, Support for Psychosis, by Jennifer Lynne Morazes,  Jennifer is the Director of our My Ombudsman Program at the DPC.  We at the DPC know that Jennifer is an amazing colleague and a rising star in our movement.  We want the rest of the world to know her.

The second editorial is from Charlie Carr, the former Executive Director of the Northeast Independent Living Program and former Commissioner of the Massachusetts Rehabilitation Commission.  For the last two years Charlie has been spearheading the DPC's response to Electronic Visit Verification.  Charlie's email to MassHealth outlines our current view on EVV in Massachusetts.

We have several good articles from the Internet on disability and a fact sheet on Non-Emergency Medical Transportation which is at risk of being curtailed.
 
Until next week, happy reading. 

John Winske
Disability Policy Consortium
DPC Editorial: Support for Psychosis

[Editor's Note: This is Mental Health Awareness month.  Dr. Jennifer Lynne Morazes is the Director of the My Ombudsman Project at the DPC.  
This editorial was published on Jennifer's blog at www.genesistimetobegin.com .  We are republishing this post with her permission.]

"I want to go home," I say to the hospital psychiatrist. I miss my husband, and I do not understand what is happening.
"Subtract 7 from 100, then keep going," says the psychiatrist.
"But I am a college graduate. I am finishing my PhD," I pleaded.
He looks at me. On the best of days, I wouldn't be able to fulfill his request. Numbers were never my strength.
I am silent. He shrugs.
"It's a simple test of concentration," he states. "Now, can you join the others?"

I had worked in community mental health. I had earned an MSW and PhD in social work. As a first-generation college student coming from a low-income background, I was determined, resilient. But, beginning in 2010, a year before I earned my PhD, I experienced my first psychotic episode. I was involuntarily hospitalized. Over the years, as doctors worked to adjust my medications, I experienced hospitalization seven times. I have been hospital-free since 2015. But, I was both a professional and a "professional" patient. I finished my dissertation and worked full-time even as I lived through this health crisis.

I currently work as a director in a disability organization. I have experienced the challenges of both health concerns and stigma. And now I sit, telling my therapist how psychiatrists - and the mental health system generally - really does not understand psychosis.

Psychiatrists, I felt initially, had cavalierly prescribed medications, then just as cavalierly changed them. Eight years later, I am thankful for the set of medications that allows me to live meaningfully. But initially, my body rebelled against the first prescription and my nervous system reeled. I went to the ER because I was in so much distress, but nothing could remedy the reaction until the medication left my system. My psychiatrist was confused. "Why did you go to the ER, what did you think they could do?" he asked. "I just wanted the sensations in my body to stop," I explained.

It's difficult when the search for a cure also disrupts your body and mind. Yet, faced with psychosis, I was overwhelmed and scared. I thought I was receiving clues, from lights, TV, music, my computer, my phone. Even if I took a walk outside, signs and orange cones seemed to be clues to a greater puzzle. I thought that if I took a wrong turn, failed a test, failed to understand the meaning of a song lyric, horrible things could happen to my friends and family, or I would be personally punished by God. Most of the scenarios in my head referenced abusive experiences I had endured in the past, now amplified.

The first time I was brought to an ER, I was put in handcuffs, for being sick. I was only confused and quiet. At one point, I screamed in an ER while I was awaiting placement in a hospital because I believed the Devil was taking over the world. Rather than ask why I was distressed, a team of people rushed in, tied me to the gurney, and injected me with Haldol. My husband had been on his way to see me, and I am so sad that he had to witness me in that position.

Psychosis does not end when the medication finally works, if it does. At least, it did not end for me. My mind remained confused. Processing information slowed. My nervous system was hyper-reactive. I did not feel fully recovered for at least a year.

No one knows what caused my break, and initially I was told it was temporary. Eventually, I came to understand my experience as post-traumatic stress disorder with psychotic features. And the condition was not temporary - despite the optimism of some of my doctors, I eventually had to accept my condition as permanent. Also, with each attempt to take me off medications and despite my best efforts, I could not recognize my own return to psychosis. Each time, I lacked this insight. One psychiatrist asked me "You do know the devil is not taking over your soul, right?" He was very kind and concerned. I responded, "I wish I did, but no, that's what I believe."

What do I wish people understood better given these experiences? Here are five main points:

1. Even if the person cannot express it, they are likely terrified, and will probably remember afterwards what happened to them when they were psychotic.
Many times people with psychosis are only depicted as scary, violent or dangerous. However, someone experiencing psychosis is more likely to experience violence than perpetrate it. I was terrified. I remember the beliefs I had when I was psychotic, and how people treated me. The people who were most helpful were not scared of me and recognized it was me who was really afraid.

2. Ask someone what is making them afraid. Do not jump to restraints.
If someone experiencing psychosis screams or yells but is nonviolent, ask them why they are afraid. Reassure them you will help keep them safe. Ask if they would like something to calm them - their phone with music, a pillow to hold, or someone close to them to wait with them.

3. Psychosis does not end when the medications work or other interventions work.
Psychosis is traumatic. It's difficult to feel like you cannot trust your mind. The experience should be treated like a potential trauma in itself, as should involuntarily hospitalization. The mind and nervous system need to recover. I started running. This allowed me to discharge anxiety and feel strong again. One hospital I stayed in had a garden and exercise equipment - which was much better than restraints.

4. Remember the person experiencing the episode is a human being.
My initial story about the doctor who dismissed me shows that too often, professionals treat patients in a dehumanizing way. It probably never occurred to him I was lonely and that I really was finishing my PhD. Also, it may not have occurred to him that I really did not understand what was happening. Take the time to orient the person to the situation. A person is not their symptoms. People receiving treatment want to be recognized as valuable.

5. Psychosis also traumatizes family members.
My husband so often was left baffled about what was happening to me. He called social workers who never returned his calls. He wondered why doctors were in such a rush when he wanted answers. He was scared too. Family members deserve kindness and support.

I am a mental health professional who has been recovering for eight years. And although I have had painful encounters with stigma that have affected my trajectory as much as the illness itself, I believe those of us in the field that have experienced psychosis can contribute an important voice. Those who experience psychosis deserve a holistic and human approach, one that builds upon the person's resilience, rather than further depleting it.

Jennifer can be reached at
JMORAZES@GENESISTIMETOBEGIN.COM
DPC Editorial: In Designing EVV, Look to California
  
{Editor's Note:  The following is the text of an email that was submitted by Charles Carr to MassHealth on behalf of the DPC.  Charles has been representing the DPC on the state and national level on Electronic Visit Verification (EVV).  Although the DPC strongly opposes EVV, except in cases where a consumer requests the service, we recognize that the Commonwealth must comply with CMS regulations.]

Dear Sir, (name redacted)

Hope you are well. I've been chairing the National Council of Independent Living (NCIL) EVV Task Force for the past year and 1/2 to organize a singular voice from the disability community nationally on the negative and sometimes deadly effects of state Medicaid agencies rolling out EVV. Recently in Ohio, there was a death of a disabled PAS employer who lost her providers because they refused to be subjected to GPS and left. She went without care for a substantial period of time and her health deteriorated to the point where she had to be hospitalized and eventually died.

NCIL is pushing for federal legislation that will ban the use of GPS and biometrics in the provision of EVV. Ideally we want the entire provision to be struck but in this Congress we fully realize that it's an impossibility. To that end, we've looked at states that are actually serious about the ramifications of EVV and have implemented robust stakeholder involvement to get it right. California DHS has the support of the broad disability community and SEIU 2015 as well as the United Domestic Workers of their EVV Electronic Time Sheet (ETS) due to their extensive stakeholder involvement over the past year. NCIL had a lengthy teleconference with CMS last month and in the wrap up we requested that they issue guidance to the states that support the California model as a best practice. They said they would take it under advisement. It's interesting to note that CMS is fully aware of what California is doing and hasn't declared it in noncompliance.

Realizing that MassHealth may be applying for a good faith extension for EVV that will push the implementation out to 2021 I am offering/suggesting to you that your team may want to save time and money looking at the model extensively if you haven't already. Below is the URL that links to the work that's being that's been done. We believe that Massachusetts advocates will support this model. I am copying several people who I know have a strong interest in ensuring that EVV protects our privacy rights while at the same time provides MassHealth with the means to comply with the 21st Century Cures Act.

http://www.cdss.ca.gov/inforesources/IHSS-Providers/Resources/Timesheet-Information

Kind regards,

Charles Carr
Legislative Liaison
Disability Policy Consortium
11 Dartmouth St.
Malden, MA 02148
Phone 978-361-6682
CharlesCarr@DPCMA.org
Net News: Forced to Divorce 

The Ozy.com had a fantastic article about the barriers faced by people with disabilities who need health insurance to survive.  As a result of archaic public policy, people in many states must choose between marriage and health care.  You can read the story here.
Net News: Dentistry and People with Disabilities 

One of the bigger barriers faced by people with disabilities is access to dental services.  Here are two articles about this issue that recently came across our desk.

The first is from the New York Times.  It focuses on the newly opened N.Y.U. College of Dentistry's Oral Health Center for People With Disabilities in New York City.  You can read about it here in the Article Saving the Teeth of Patients with Special Needs. (I know I hate the title too.)

The second article appeared on the California Healthline, For Those with Developmental Disabilities, Dental Needs are Great, Good Care Illusive.  

We hope you find these articles informative.
Net News: Fact Sheet Non-Emergency Medical Transportation  

From:  Justice in Aging

Non-Emergency Medical Transportation (NEMT) is a federally required Medicaid benefit. Within certain guidelines, each state Medicaid program is given significant discretion in crafting the NEMT benefit for Medicaid beneficiaries. This important program currently serves over 7 million Medicaid enrollees who, due to cognitive and physical changes, may have a reduced ability to drive or use public transportation. It is now under threat.

The Centers for Medicare and Medicaid Services (CMS) has signaled that it will propose a regulation in May 2019 to make the mandatory NEMT benefit optional for states. States could then choose to amend their Medicaid rules to eliminate or reduce the benefit.

A new Justice in Aging fact sheet Medicaid Non-Emergency Medical Transportation for Older Adults: A Critical Benefit at Risk provides advocates with information about why NEMT is important, how it is administered, and the current threat to this vital benefit, as well as information on where to go for more information and advocacy tips for preserving the NEMT benefit in their states.
Calendar:  Tenth Annual Diversity Job Fair

When:  Thursday, May 16, 2019, 11:00 A.M. - 1:00 P.M.

Where:  Arlington Town Hall, 730 Massachusetts Avenue, Arlington, MA  02476

The Town of Arlington's Commission on Disability and
The Massachusetts Rehabilitation Commission

Invite you to join us.

COME AND MEET WITH EMPLOYERS!
Museum of Science, CVS, Kayem Foods, State Of Mass Human Resources, MASS DOT/MBTA, RHD, ACE Employment, Enterprise Rental Car, Cambridge Health Alliance, Goodwill, VPNE PARKING, McLean Hospital, MassPort, Maximus, New York Life, Partners Healthcare, Perkins School for the Blind, Allied Universal, Enterprise Rental Car, International Shoppes
AND MANY MORE!

Parking Information

On-street parking is available in the front of Town Hall on Massachusetts Avenue and on Academy Street (which borders the Town Hall).

If you need an interpreter or an accommodation please contact Gregory.Ames@mrc.state.ma.us
Calendar:  My Ombudsman Program DeafBlind Information Sessions

Dates and Locations

1) May 21st at 1pm to 3:30pm - Center for Living and Working (CLW), 484 Main Street, Worcester, MA 01608

2) May 23rd at 12:30pm to 3pm - DEAF, Inc., 215 Brighton Avenue, Allston, MA 02134

3)  May 29th at 10:00am-1:00pm - MRC 21 Spring Street, Unit 2, Taunton, MA 02780

4)  May 31st 12:30pm - 3pm - Stavros ILC, 227 Berkshire Avenue, Springfield, MA 01109

Lori Siedman, Deaf and Hard of Hearing Ombudsman, is coming to Taunton, Boston, Worcester and Springfield areas to share about the My Ombudsman program!

Please RSVP to Lori Siedman before Friday, May 10, 2019 if you are planning to attend so we can secure DeafBlind interpreters and/or CART for you!

To request DeafBlind interpreter or CART, please contact Lori Siedman at LSiedman@myombudsman.org or 339-224-6831 by Friday, May 10, 2019.
Calendar: Frida Kahlo and Arte Popular Tour of MFA for Hard of Hearing

When:  Sunday, May 19, 2019, 10:30 A.M.

Where:  Museum of Fine Arts, Boston, Linde Family Wing Entrance

The influence of Mexican folk art on Kahlo's work and life

"Like many artists in Mexico City's vibrant intellectual circles, Frida Kahlo (1907-1954) avidly collected traditional Mexican folk art-arte popular-as a celebration of Mexican national culture. She drew inspiration from these objects, seizing on their political significance after the Mexican Revolution and incorporating their visual and material qualities into her now iconic paintings.

"Following the recent acquisition of Dos Mujeres (Salvadora y Herminia) (1928), this is the MFA's first exhibition on Frida Kahlo. It tightly focuses on Kahlo's lasting engagements with arte popular, exploring how her passion for objects such as decorated ceramics, embroidered textiles, children's toys, and devotional retablo paintings shaped her own artistic practice."

1. To register, email Ronit Michom at RMinchom@mfa.org or call 617-369-3189.

2. In the subject line, put the name of the tour (Frida Kahlo), the date (Sunday, May 19), and the time of the tour (10:30 a.m.).

3. Indicate whether you want a neckloop or a head set. If you need only an ALD receiver, please specify . If you plan to use your own equipment and want the guide to wear an additional microphone, then please specify.

4. Please arrive 15 minutes early to get your neckloop and headset and to make sure that they are working.

5. Remember that there is a limit of one guest with you. You must register your guest whether or not an ALD is needed.

6. Tours will leave from the Linde Family Wing Entrance, which is on Museum Road.

7. Email access@mfa.org if you register and are then unable to attend. If you have registered and are unable to attend, please let our tour leader Karen Moss ( karmoss@hotmail.com) and Ronit Minchom ( RMichom@mfa.org) know via email even if it is the day of the tour.

8. Registration closes on May 10 unless the tour fills up before that time.

Please note: If fewer than 6 people register for the tour, the tour will be canceled.
Calendar:  Community Training on Emergency Preparedness for People with Disabilities 

When:  Tuesday, May 21, 2019, 1:00 P.M. - 2:30 P.M.

Where:  Boston City Hall,  5th Floor, Piemonte Room
One City Hall Sq,   Boston, MA 02201

The Boston disability community is invited to join the Boston Disability Commission and the Massachusetts Office on Disability for a training on preparing ahead of an emergency. Attendees will learn how they can personally prepare, how local agencies prepare, and will have the opportunity to meet and ask questions of local first responders.

The goal of this training is to ensure that people with disabilities are prepared in times of emergency.

Attendees will also receive an "Emergency Go Pack" with essential items that might be needed during an emergency.

This event is wheelchair accessible. ASL and CART available upon request.

For accommodation requests please contact Evan George at 617-979-7313 or RSVP online by May 7, 2019.

If you would like to attend, please pre-register for this training
In This Issue
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