July 11, 2016
Disability Policy Consortium Weekly Update


This is an unusual issue of the Weekly Update with only a few stories.   On the other hand, we are sharing one long piece, our written testimony on the PCA Overtime issue.

We also call your attention to the ADA Celebration this Wednesday the 13th at Boston City Hall.  This is always a fun event.  On the 18th there is going to be an informative discussion about upcoming changes in MassHealth and building partnerships with Accountable Care Organizations.

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

John Winske
Disability Policy Consortium
Advocacy Update: DPC Written Testimony on PCA Overtime

July 8, 2016

Dear Sirs or Madams

I am writing on behalf of the Disability Policy Consortium (DPC) in response to your proposed changes to regulations, 130 CMR 422.000: Personal Care Services. The DPC is a cross-disability advocacy and research organization based in Malden, MA with members from across the Commonwealth. We are writing to express our strong opposition to the proposed regulations.

Begun with only a handful of men with spinal cord injuries, the PCA program has purposefully evolved to serve 28,000 people who now live in the least restrictive environment in compliance with the U.S. Supreme Court Olmstead Decision. For four decades, the PCA program has served as the bedrock upon which the Commonwealth intentionally promoted community based services and programs for people with disabilities.

We begin our response by noting that prior to the current PCA overtime proposal, the DPC has had a strong working relationship with EOHHS and MassHealth staff in the Baker administration. DPC staff and members worked in conjunction with Baker administrative staff spending significant time in discussions around the development of policies, programs and proposed changes. Indeed, we have always felt our advice was well received and the feedback heeded and frequently incorporated into Administration decision-making. Which is why we are truly mystified by these proposed regulations and the lack of stakeholder representation in their development.

The State is tampering with a single thread in a complex network inter-relationships between many human and economic factors. At worst, the proposed capping of PCA's work hours at forty hours per week will undermine our achievements in independence and community integration; something we have worked so hard on and together for nearly half a century. At best, the 40 hour PCA restriction will have a deleterious effect on the quality of life and health of consumers who rely on PCA services and will cost MassHealth significant resources as a result of increased health care, medical and institutionalization costs.

Any discussion regarding the "true" cost savings of the current PCA system must take into account the unique considerations of three principle entities which would be impacted by capping PCA hours at 40 hours per week: PCAs, persons with disabilities and MassHealth expenditures.

First, the eligible PCA pool of candidates tends to be: low income, single parent, have only a primary educational status, lack private transportation options, do not speak English as their preferred language, and have been born outside of the United States. In other words, the pool of potential PCA candidates barely squeak by on $29,000 per year. Limiting their hours, essentially limiting the income they can earn as a PCA, will force a significant segment of responsible career PCAs to seek employment elsewhere. As a result, the only pool of candidates available will be individuals for whom PCA work is only a part-time or secondary employment. This fact alone could have huge implications for the quality of care persons with disabilities receive. It will also result in increased competition among persons with disabilities to secure responsible, reliable and competent PCAs (which is already difficult to do).

It must also be noted that PCA's are not simply interchangeable. Many of the tasks regularly performed by PCA's, such as toileting, bowel stimulation, cauterization and handling of feminine hygiene needs, are deeply personal in nature. An accident with some of these tasks or others such as transfers or use of Hoyer lifts, for instance, could result in serious injury to the consumer. In fact, a consumer may only trust certain individuals to perform these tasks.

Each additional employee also means giving potential unfettered access to your domicile and possessions to another individual. Consumers often have to give their keys to PCA's so they may enter when the consumer is in bed or incapacitated.

Second, the population of persons who need PCA services are highly vulnerable and medically fragile. They are vulnerable to exploitation by nefarious and well-meaning care givers who lack the desire or ability to address their complex care needs. Persons with disabilities are also exploited by a medical system which over medicalizes their "condition" and needs. The Commonwealth will be adding significant stress to lives of people who are already inundated and overwhelmed with managing considerations, equipment, people and services which are essential to their health and well-being.

A consumer will likely need to hire additional employees to meet the requirements of these regulations. It will cost consumers financial resources to advertise and hire new employees. It will also cost them time and money to train additional PCA's. MassHealth will only pay one PCA so consumers often pay the trainee or trainer out of their own pocket. It will also greatly increase the difficulty of managing staff when additional employees are hired. This increase in complexity may well result in some consumers opting for highly expensive institutional care.

Third, the move to cap PCA hours may only result in cost shifting for the State. In fact, it may result in higher costs and increased liability. MassHealth needs to look at the entire cost-savings and liability picture. If they are only looking at a single line item, i.e., the cost of PCA overtime, then the Commonwealth is being penny-wise and pound-foolish. More importantly, the it may be putting persons with disabilities in harm's way.

In their deliberations, did MassHealth calculate annual cost-savings of PCA services? For example, by providing routine care, PCAs save the Commonwealth money by avoiding higher cost nursing, medical, therapeutic and home-health care services. PCAs frequently provide complex medical services which saves a considerable amount of money through stabilizing and managing medical conditions by engaging preventive services and treatment. Secondly, PCAs save even more money by avoiding emergency medical services and treatment. Finally, PCAs save the Commonwealth another large sum of money when their availability and services prevent institutionalization.

By limiting persons with disabilities access to quality PCAs, the the Commonwealth of Massachusetts may be increasing medical expenses for MassHealth due to increased medical costs, hospitalization costs and institutionalization due to no care or inferior care at home.

In conclusion, we respectfully, but forcefully, request that MassHealth withdraw the proposed regulations and begin discussions with consumers, providers and 1199SEIU to identify potential improvements in meeting financial and programmatic goals.


John E. Winske
Executive Director
DPC Internship:  Research Opportunity  

Are you interested in research and building your resume? The Disability Policy Consortium, a leading agency in research that affects people with disabilities is looking for an intern who will help with survey creation about people with disabilities and their healthcare. We are looking for someone with a working knowledge of creating surveys and analyzing results. This position will be part-time and will last until January with the possibility of an extension. The Disability Policy Consortium is located in Malden, MA near the orange line though much of the work may be done remotely.

Skills needed:

* Ability to create surveys
* Ability to adapt language for particular audiences
* Ability to think creatively about analyzing results
* Excellent written communication skills
* Knowledge of Survey Monkey a plus
* Bachelor's degree needed. Currently in Master's program in public health, social work, or health communications preferred.

This is a volunteer position that will give you an opportunity to hone your research skills.

Please send a resume and cover letter to Kimberley Warsett at kwarsett@dpcma.org. People with disabilities are encouraged to apply.
Advocacy Opportunity: MassDOT Survey   

Dear Members and Friends,

MassDOT (Massachusetts Department of Transportation) has designed a survey to help you identify how the MBTA should prioritize different types of investments over the next 25 years for bus, rapid transit, commuter rail, ferry, and THE RIDE services. MassDOT is hoping to get a good representation of riders from across the region's diverse population, so your participation would be greatly appreciated.

Please access the survey online at http://fluidsurveys.com/s/focus40/

If you have questions, please contact Jennifer Slesinger, MassDOT Office of Transportation Planning, by phone at 857-368-8871.

The deadline for response is July 31st.


Janie Guion
AACT Coordinator
Net News: Florida Uber Driver Refuses Ride for Guide Dog User, Gets Arrested

Fox 25 of Boston had a story of a blind man with a guide dog in Florida who tried to use Uber.  The driver not only refused the gentleman and his dog, he apparently tried to drive away.  The driver wound up being arrested, charged with battery and failing to transfer a blind man in the company of a service dog.   You can read more here.  
Calendar:  Boston ADA Celebration 

When:  Wednesday, July 13, 2016, 12 noon - 3 p.m.

Where:  Boston City Hall Plaza

Mayor Martin J. Walsh & the Mayor's Commission for Persons with Disabilities

Welcome You to Attend

A.D.A. Celebration Day

A FREE event for children, families & individuals of all abilities.

* food * music * t-shirts * friends * fun  *

New This Year Government Center MBTA Station is Now ADA Compliant & Open to the Public.

* Wheelchair Access * ASL * CART * Scent-free *

Please forward this on to your networks - We hope to see you all here!
Calendar:  MassHealth Reform:  Building a Framework for Partnerships between ACOs and the Disability Community    

When:  Monday, July 18, 1:00 - 4:00 PM

Where:  Courtyard Marriott Hotel, 275 Tremont Street, Boston

The DAAHR executive committee is encouraged to participate in what will be discussions about building partnerships between community-based organizations, the disability community, and potential Accountable Care Organizations and MCOs as we seek to promote innovation and best practices that can meet the often complex needs of people with disabilities on MassHealth. We already have about ten healthcare/potential ACOs signed up to participate.

To attend this event please RSVP to Susan Smith, ssmith@bostoncil.org.  Send  requests for accommodations to her also.  This is not a public meeting in the mode of other DAAHR forums, it's invitation only, designed to develop relationships for the long haul. 

Our thanks are extended to the Blue Cross Blue Shield of Massachusetts Foundation for its support of this important event.

Bill Henning and Dennis Heaphy
DAAHR co-chairs
In This Issue
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Disability Policy Consortium
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