Ventilator-Assisted Living©

Summer 2005, Vol. 19, No. 2

ISSN 1066-534X

IVUN's bi-monthly newsletter is a benefit of Membership.
Click here to become a Member or Renew Now!
Or, download a PDF order form, or call 314-534-0475.

Read selected articles from this issue ...

cover of summer 2005 issue of Ventilator-Assisted LivingLiving on Your Own in College and Beyond
Scott Bennett, Taunton, Massachusetts

The Experiences of Families with Ventilator-Assisted Children at Home
Franco A. Carnevale, RN, PhD, Eren Alexander, RN, MSc (A), Michael Davis, MD, Janet Rennick, RN, PhD, Rita Tronini, RRT, MA, Montreal Children’s Hospital and Montreal Chest Institute/McGill University, Montreal, Canada

Masks: Obtaining a Good Fit, Part I
Diana Guth, RRT, Owner, Home Respiratory Care, Los Angeles, California

Home Is Best
Liz Martin, Port of Monteith, Scotland

Ventilator Conference in Lyon

Potpourri


Living on Your Own in College and Beyond

Scott Bennett, Taunton, Massachusetts (srbenny@yahoo.com)

Photo of Scott at home.I have Duchenne muscular dystrophy and am now 40 years old. I have been living on my own since I was 18 years old. Before I graduated from high school, I began to make arrangements to live on my own and attend college.

I had applied to the University of Massachusetts-Boston and for various scholarships and a Pell Grant (federal college grant). I applied to the Massachusetts Rehabilitation Commission, a state vocational rehabilitation agency, for additional funding for college and any additional adaptive equipment I might need. I also applied to the Boston Center for Independent Living (BCIL), which provided training in the skills individuals with disabilities need to live on their own.

BCIL then had a nine-month program where you lived in an apartment supplied by them and where you learned independent living skills, including hiring, firing, training personal care attendants (PCAs), managing your finances, setting up your own personal care physician, transportation needs, etc. Upon completion of the nine-month program, the independent living center would assist you in finding your own permanent apartment. I do not believe the independent living center still has this nine-month program, but I do know that they still provide in-home training for independent living skills.

When I found my own permanent apartment, I was completely responsible for advertising, hiring, firing and training PCAs, managing my own finances, and managing my own healthcare needs. Generally I tried to maintain a staff of five to seven PCAs, each one assigned to a different time slot. I tried to keep a flexible schedule for myself as well as for my PCAs, in case of illness or vacations.

To find my PCAs, I started with paid advertising in the “Help Wanted” section of the local newspaper. But when the cost of advertising in the newspaper became too high, I began advertising at some of the local universities and colleges, including my own college. I found that often the best PCAs were nursing students or physical therapy students.

The salaries of the PCAs were paid for (and still are) by the Massachusetts Medicaid PCA program. The hours per week allocated to me were determined by Medicaid, with input from me and a nurse from the independent living center. The time slots that I set up were two hours in the morning (7 am–9 am), one hour at lunchtime, two hours at dinnertime (5 pm–7 pm), and two hours at bedtime (10 pm–12 am). At 18 years old, bedtime was 12 am or 1 am; at 40 it is more like 11 pm. I was allocated additional money for an overnight assistant who was also a live-in assistant.

Generally my live-in assistant/roommate was also a college student, who performed both the bedtime shift and the overnight shift. The live-in assistant, in addition to wages, also was able to live rent-free – a big incentive for a college student – because the apartment was federally subsidized (Section 8). Recipients paid 30% of their income toward the rent, and the subsidy supplied the remaining 70%. With Supplemental Security Income (SSI) as my only source of income while in college, my rent was only about $150 per month.

The State of Massachusetts maintained a publicly-funded transportation ser-vice for residents with disabilities that I used to get back and forth to college initially. Later I bought my own used van through vocational rehabilitation and hired a driver to drive me to college. The Disabled Students Center of the University of Massachusetts would assist with note-taking in class (if you were unable to take your own notes) and with making arrangements for any special needs in the classroom.

One piece of advice I can offer is that when you start taking classes in your first year of college, you should consider only taking half the regular course load. Then take three-quarters of the course load in the second year, and finally in the third year work your way up to a full load. This way you do not get overwhelmed with schoolwork while you are learning to live on your own. By the third year of college you are generally into a routine, and managing your PCAs and your care become second nature. Of course taking classes in this manner means it may take you six or seven years to finish college instead of four, but I believe it is well worth it in the long run.

The more support you have from your family and the more support services you have make it that much easier to live on your own. Many resources and support services are available: SSI, Medicaid, subsidized housing assistance, independent living centers, vocational rehabilitation services, transportation systems. You should investigate and enroll in as many of them as possible.

I graduated from college at the age of 25 (seven years of college) with a Bachelor of Science degree. After college I began employment as a software engineer for a relatively large company where I’m still employed today. Shortly after starting my career, I met and fell in love with a wonderful woman. We’re still together after 14 years.

About 10 years ago, I was able to purchase a new wheelchair-modified van, with the assistance of the same vocational rehabilitation agency that assisted me in college. About five years ago, I moved out of my apartment and – through the Massachusetts Housing Finance Agency, which provides low-interest mortgages to low-income and disabled residents of the state – purchased my own home.

Now I am a taxpaying citizen, no longer dependent on subsidized housing or SSI income benefits. The only government benefit I still receive is Medicaid for my medical needs and PCA salaries. Section 1619(b) of the Social Security Act allows any disabled individual to continue receiving Medicaid as a SSI beneficiary even after beginning employment and owning a vehicle and a home.

Technically I am still receiving SSI even though my SSI income is zero, and I can continue receiving SSI Medicaid as long as my medical expenses are such that I would not be able to continue working without Medicaid.

There are many agencies and assistance programs available to individuals with disabilities that can provide you with the means to live on your own, get an education, gain employment, purchase your own home, have your own family, and achieve all of your goals and dreams.

Scott Describes His System

The noninvasive ventilation system that I use includes a volume ventilator with a lipseal mouthpiece interface (with headgear) during the night and mouthpiece intermittent positive pressure (also known as sip intermittent positive pressure ventilation) during the day. The 45-degree angle mouthpiece and tubing are held in place with a microphone gooseneck and clamp assembly mounted on my wheelchair. I use the ventilator more than 22 hours per day, but not when I’m transferring, brushing my teeth, and doing other routine tasks that take only five to ten minutes to perform.

I also use a CoughAssist™ and a pulse oximeter to monitor my oxygen saturation at home whenever I have an upper respiratory infection. My frequency of respiratory infections averages one per year, and the CoughAssist™ and pulse oximeter are instrumental in minimizing hospitalizations due to respiratory infections. I also make every effort to minimize exposure to respiratory infections by not allowing PCAs to work for me when they are sick and making sure they frequently wash their hands.

When I think I’m getting a respiratory infection, I occasionally take prophylactic antibiotics and use chest physical therapy and manually assisted cough, also known as the quad cough technique (http://calder.med.miami.edu/pointis/asscough.html) to assist in clearing secretions.

I have maintained a very healthy lifestyle with noninvasive ventilation, so much so that after my pulmonologist – who first started me on noninvasive ventilation – retired, I did not replace him. I manage my own pulmonary needs and visit my primary care physician annually.

Equipment:

PLV®-100 Volume Ventilator (Respironics, Inc.)
Bennett Lipseal Mouthpiece Assembly (Puritan Bennett)
CoughAssist™ (J.H. Emerson Co.)
Onyx® 9500 Finger Pulse Oximeter (Nonin Medical Systems)

Back to Contents of this issue of Ventilator-Assisted Living

Back to top