July 25, 2016
Disability Policy Consortium Weekly Update


As the temperature climbs outside so do our advocacy efforts.  They are hot and heavy.  We have basically one week left to get the AAB bill through the House.  Please, if you have not already called your State Representative please do so.  They need to ask the Speaker to bring the bill to the floor for a vote.

We got bad news on the PCA Overtime issue.  Our pleas were ignored.  As a community, we delivered powerful testimony.  We did get one piece of good news this weekend as the House and Senate overrode the Governor's veto on an important issue.  (Read the article below.)

We call your attention to an significant hearing on August 10th.  The insurance companies and EOHHS want to make it very difficult for consumers to change manage care organizations.  We must fight this unfair proposal.

Have a good week and a s always, happy  reading.

John Winske
Disability Policy Consortium
DPC Advocacy Update: Set Backs and One Victory   

Advocacy efforts aimed at the Executive Office of Human Services and MassHealth appear to be getting more difficult.  The final regulations around PCA Overtime are out and they are ugly.   We were ignored completely.  MassHealth is proceeding with efforts to eliminate most PCA overtime.  

MassHealth has offered to involve us in efforts to develop potential exceptions to these regulations.  The problem is that an exception is not a regulation.  This means that the exceptions could be cancelled at any time while regulations must be changed by a formal process. This is a  well-meant but negligible adjustment to an endeavor that is doomed to fail.

These regulations will kick in by September 1st.  This means nearly 6,000 PCA users will have about 5 weeks to hire new PCA's or seek a temporary waiver from their PCA Management agency. 

Sadly, we offered to help MassHealth to devise a better policy to control costs.  We were ignored.  Ironically, last week Governor Baker thanked disability advocates for helping with MBTA policies to control costs.  When the T wanted to eliminate all non-ADA RIDE trips, we offered to help explore methods of control costs.  This week the Governor applauded us. Meanwhile Medicaid ignored us.  Go figure.

We are looking at all options for how to respond to these misguided changes.  We will keep you posted.  If you have any ideas for how we should respond, let us know.

This PCA change, unfortunately appears to be only the beginning of  bad policy changes being considered by MassHealth.  The Baker Administration may be starting to demonstrate how much he dislikes people who need assistance.

On August 10th, there will be a public hearing on requiring people on MassHealth managed care to be "locked in" and unable to change plans no matter how bad the services might be. 

Speaking of Governor Baker and his distaste for people who need a little help, you may remember we fought the Governor's efforts to kick 6,800 families who receive SSI off of TAFDC.  The DPC and other advocates fought the proposal and got the House and Senate to kill the proposal.  The Governor vetoed the House and Senate decision however,  the House and Senate overrode the Governor's veto.  Nice to know the good guys can still win one!

John Winske
Public Hearing: Managed Care Lock-in 

When:  Wednesday, August 10, 2016, 10:00 A.M.

Where:  Boston

In January, EOHHS announced plans to implement a Managed Care lock-in policy effective October 1, 2016.

This will restrict the ability of MassHealth members to freely change managed care plans to a 12 month cycle. This means a person will have a 90 day trial period, but after that time will be stuck in a plan for an entire year unless they meet exemption criteria!

We have learned from One Care that a very high percentage of people who are "passively" enrolled in a plan don't even know that they are enrolled until 90 after days or more.

A public hearing is scheduled for Wed. August 10 at 10 am in Boston. Written comments are also due by 5 pm August 10.

The public notice, proposed rules, current rules, & a link to sign up to testify are all posted at


Make sure you get the word out. We need a strong representation
Advocacy Opportunity:  Survey Health Care Barriers for Deaf, Deaf/Blind and HH

On June 26, DEAF, Inc., the Dept. of Public Health (DPH) and the Lurie Institute for Disability Policy (Brandeis Univ.) hosted a special forum on healthcare access issues in the Deaf community. During this forum, Deaf community members filled out a survey and shared stories about problems with insurance, lack of access at emergency rooms, and more. The DPH/Lurie representatives were shocked at some of the stories they heard. They are taking our concerns seriously and WANT MORE from us.

The DPH/Lurie representatives are health and disability professionals. Through a federally funded grant, they spent months collecting stories and surveys from people with disabilities all around MA about healthcare barriers. After listening to Deaf community members share their stories on June 26, one representative said "it was the most powerful, thought-provoking work event I have ever attended." DPH/Lurie understands that D/DB/HOH/LD people face serious barriers that other people with disabilities don't experience.

If DPH/Lurie gets enough survey responses and stories from us, they might be able to write a SPECIAL, SEPARATE REPORT specifically on our community. THIS IS VERY, VERY EXCITING. Why? Because this report will go to the CDC -- the federal health agency based in Atlanta, GA. And it can be used to justify better services at home in Massachusetts.

I need YOUR HELP to give DPH/Lurie as much information as possible.

They need more: (1) survey responses and (2) stories by Monday, August 8, 2016.

Please fill out the survey if you are:
- A person who is Deaf/DeafBlind/Hard of Hearing/Late-Deafened living in MA.

- A family member or caregiver of a D/DB/HOH/LD person living in MA.

- An ally/advocate of the D/DB/HOH/LD community (including ASL interpreters).

*If you completed the survey 3 years ago, please do the survey again!
*If you already completed the survey on June 26, 2016, do not fill it out again.

SURVEY OPTION 1: send through email
1. Go to http://bit.ly/hna2016 and download the survey.
2. Save the file on your computer.
3. Fill out the survey electronically.
4. Save the survey file again.
5. Email the survey file as an attachment to Monika Mitra at mmitra@brandeis.edu OR Lauren Smith at smithL@brandeis.edu before Monday, August 8, 2016.

SURVEY OPTION 2: print and mail
1. Go to http://bit.ly/hna2016 and download the survey.
2. Print the survey.
3. Fill out the survey by hand.
4. Mail completed survey before Monday, August 8, 2016. Send to:
Brandeis University
Heller School for Policy and Management
Attention: Lauren Smith
415 South Street (MS 035)
Waltham, MA 02454-9110

Tell DPH/Lurie about healthcare experiences and issues that happened in Massachusetts only -- at the ER, your doctor's office, or with another healthcare provider. This also includes insurance coverage, access to gyms and health food stores, transportation, and medical equipment. Send your stories before Monday, August 8, 2016.
- Lack of accessible substance abuse/detox services

- Lack of ASL-fluent mental health counseling services

- Medical appointments cancelled and postponed repeatedly

- Waiting hours and hours in the emergency room

- Being forced to look at the VRI screen while you are in pain or cannot see

- Buzzing for nurses that never come to your room because you cannot hear the intercom

- Being given medication without knowing what it is

- Requests for live interpreters ignored repeatedly

- Private insurance refusing to pay for healthcare costs

- Problems getting medical transportation because the company keeps hanging up on you

- Not having qualified interpreters

OPTION 1: call Monika Mitra at 781-736- 3807 and share your story through a VRS interpreter (or spoken English).
OPTION 2: call DEAF, Inc. Project HOPE at 617-505-4818 and a staff member will help you translate your ASL story into English (for a letter or email).
OPTION 3: email your story to Monika Mitra at mmitra@brandeis.edu OR Lauren Smith at smithL@brandeis.edu
OPTION 4: type a letter yourself and mail it to:
Brandeis University
Heller School for Policy and Management
Attention: Lauren Smith
415 South Street (MS 035)
Waltham, MA 02454-9110

Please contact me if you have any questions.

Jill Hatcher, MS
Project HOPE Director
DEAF, Inc.
215 Brighton Avenue
Boston, MA 02134
Office: 617.505.4818 (VP/V)
Main: 617.254.4041 (TTY/V)
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Advocacy Opportunity: Tell CMS About DME Barriers for Duals 

Consumers with both Medicare and Medicaid coverage face recurring problems getting approval for Durable Medical Equipment (DME), getting repairs, and finding reliable suppliers. DME includes many vital items, such as wheelchairs, walkers, hospital beds, home oxygen equipment, and even diabetes test strips used with a glucose monitor. After dialogue with advocates about these problems, the Centers for Medicare and Medicaid Services (CMS) recently issued a Request for Information seeking more information about problems accessing these vital forms of equipment.

This is a very important opportunity to tell CMS what isn't working and to improve access to DME. Please consider commenting and share this opportunity with others, both advocates and consumers, who can provide input to CMS.

The deadline for comments is August 23.

CMS noted some of the obstacles facing dual eligibles in getting access to DME including:
  • Conflicting DME approval processes for Medicare and Medicaid
  • DME access problems for people who have Medicaid first and then become eligible for Medicare
  • Getting coverage for repairs, particularly getting Medicare coverage for an item originally obtained through Medicaid
  • Differences between Medicare and Medicaid approved suppliers (many providers are approved for one program, but not the other)
  • The agency asked for examples of these problems, as well as suggestions for legislative and administrative measures that could remedy the issue.
The full list of CMS questions is here. It is very open-ended. We hope that policy advocates will talk about trends they see and specific policy changes that would help. We also hope that consumers who can recount first hand problems will respond (but since comments are public - please don't include personal information such as a Medicare number).

File your comments on Regulations.gov. Directions on how to file are found here. It is simple. Comments can be short or long and do not need to be formal.
Net New: UMass Dartmouth College of Engineering Capstone Project

The UMass Dartmouth College of Engineering requires a Capstone Project of each of its senior engineering students.  Students typically work in groups of 3 to 5 under the guidance of a faculty advisor. Each Group usually has at least one Electrical, Mechanical and Computer Engineering major.

The College is in the process of receiving project proposals right now.  These projects need to be of sufficient sophistication to involve a student group in design and fabrication for a period of several months. Last year I sponsored 2 projects. One involved building a solar powered device to check for wrong-way drivers entering a highway from an exit ramp. The other was a detector to be mounted under a school bus to detect the presence of an object such a child under the bus.

Generally, project sponsors are expected to pay for the materials used in the project - mine ran nearly $500 each - and the sponsor gets to keep the finished product.

In years past I have had students build portable communications devices for non speaking children and a retrofit motorized drive unit for a manual wheelchair. I also sponsored the development of a device to be used to transmit the GPS coordinates of a non speaking wheelchair user in the event that her wheelchair became disabled.

I would be happy to act as the 'go between' to help develop projects for people who have ideas.

Time is of the essence! Project proposals have to be ready for student review early in September when students will be selecting their projects for the next academic year. Projects which are selected in September can be expected to produce finished products next May.

UMass Dartmouth is certainly not the only university accepting project proposals. Some vocational high schools are also looking for projects.

I have attached the Project Proposal form. Completed forms can be sent to Prof. Vance McCollough. Please send me an information copy as well. Prof. McCollough's email address is  vance_marge@cox.net

Les Cory LCory@umassd.edu

Director, UMass. Dartmouth Center for Rehabilitation Engineering.
Net News: Medical Therapy That's No Therapy at All

The Boston Globe had an interesting article about "step therapy" and a young man who suffered significant harm because of insurance requirements.  A bill in the legislature could bring some change.  You can read more here,

Thank you to Linda Long-Bellil for sending this story along.
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