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NO BIG BROTHER HERE

by Mary Frances Platt  

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Like most crips, I battle daily over numerous issues: barriers to my wheels, discrimination against my service dog, denial of medical necessities like oxygen and pain medication -- in general, the right to live independently as an American with appropriate assistive technology, dignity, and with the same rights granted non-disabled Americans.

Unlike most crips in this country, I do NOT have to do battle over my right to live in my home with consumer-directed personal assistance. I receive approximately eight hours of daytime and two hours of nighttime assistance daily.

I hire, train, and, when necessary, fire, my own assistants (sometimes they're called "attendants"). I determine their work schedules and tasks, and I instruct them in exactly the manner in which I want the assistance to be delivered. In other words, I as the employer, am in total control of my personal assistance program.

My assistants are paid a living wag -- $9.65 per hour, and are covered by Workers Comp and Social Security. If they work Christmas or Thanksgiving, they receive time and a half. Soon we expect to provide health insurance for all our assistants working 20 or more hours per week.

In case of an attendant emergency, the home health agencies in our state are able to fill in with agency-provided "homemakers" and "home health aides" until we are able to put more of our own attendants in place.

Most crips in Massachusetts have the choice of either using a fiscal intermediary or doing the paperwork end of the payroll themselves.

Children living at home can also now receive personal assistance hours.

In Massachusetts, personal assistance is part of our state health plan. For some, like myself, state Medicaid is manifested as Mass Health. Working people with disabilities may also pay into Common Health, which provides the same coverage as Mass Health. In other words, working crips can also get personal assistance services in the state of Massachusetts! A few years ago, a new program was written into the personal assistant program which ensures that people with cognitive disabilities, who need assistance to hire , train, direct, and fire their attendants, may also have access to consumer directed assistance by means of a "surrogate" who helps them with these tasks.

 

 

How does Massachusetts' personal assistance program work?

Once a year, a registered nurse comes to my home and re-evaluates my need for personal assistance. She figures out, using a standard minute-by-minute chart, how long it should take for the specific types of assistance I need, and totals up how many minutes a week I need.

Indeed there are certain time allotments for only certain tasks, but upon appeal, flexibility within that framework is possible.

For nine or so years I have had the same knowledgeable, kind, and crip empowering person evaluate me. We sign a bunch of papers, and the local independent living center, which administers the program, ships them off to my doc, who then signs off on the amount of hours so they're officially appove. Back the paperwork goes to the independent living center. From there it goes to the Mass. Division of Medical Assistance.

Within 30 days, one gets one's hours approved. Sometimes they're modified (most crips expect -- and get -- a modification of their hours, but that can be appealed, usually successfully). Once the hours have been finalized with the state Medicaid agency, though, no Big Brother hangs around watching, modifying, or in general snooping on how one runs one's own life with attendants.

If you choose to have a fiscal intermediary, the only paperwork you have to do is to fill out bi-weekly time sheet which documents each assistant's times, hours, and days (or nights) worked.

Over the years, the program has changed and improved, thanks to the work of CORD (the Cape Organization for Rights of the Disabled) and other Massachusetts independent living centers. Occasional demonstrations, rallies, sit-ins, testimonies, and letters from Massachusetts crips to state officials have helped keep the program on target.

Because of the continued activism, education, and agitation from Massachusetts' disability community, the state government really understands that it is better to provide in-home, consumer-directed assistance than it is to lock us up in some money-grabbing nursing hole.

Of course I've run into snags over the years with the program. But the funding itself is not a cause of great stress, since it's a strong program that's not going away.

Once as a teenager, and once as an adult, I was institutionalized -- both times for less than six months. Even though I am often very ill, I usually spend no more than two days in a hospital -- because whenever I get hospitalized I work with my doc and independent living center to bring whatever I need home. Sometimes I've combined the personal assistance program with a visiting nurse. Often, early intervention, increased emergency assistance and visiting nurse services can prevent hospitalization .

I would fare better, health-wise, in a warmer climate. I would love to have the choice of living in Florida or Arizona -- or even Hawaii!! But I know when I got it good, assistance-wise -- and from what I can see, Massachusetts may have the best consumer-directed personal assistance program in the country!

Read more about disability activists' fight against nurse practice acts.