The Resource Newsletter - 2008 Edition of the Massachusetts Rehabilitation Commission Home Care Assistance Program
IN THIS ISSUE:
Director's Notes What is Quitworks?
What's new in Home Care?
Vendor Showcase: Arcadia
A Helping Hand for a Healthier Life
Finding Your Joy and Acting Upon It
Basic Utility Service Protections
Physical Disability: Not the End of Life
Community Resources: MassMATCH
Soup recipe: Pumpkin Soup
The MRC Home Care Assistance Program staff encourage consumers to call with questions or concerns regarding homemaking services.
The MRC-HCAP STAFF
Betty Maher , Director
Angela Cipriano, Supervisor
Felix Jordan , Supervisor
Christine Rinaldi, Administrative Assistant
Bonny Taforo, Clerk
Lilly Lau, Accountant
Edward Loring, Accountant
Angela Hoskins, Intake Coordinator
April Anderson South Worcester County, Worcester A-G and surrounding towns of Middlesex and Norfolk Counties
Duncan Arden Essex County and surrounding towns of Middlesex County
Eloise Cruz Boston I-M and surrounding towns of Middlesex and Norfolk Counties
Katherine Chesebro Bristol County and surrounding towns of Norfolk County
Maria King Boston N-Z and surrounding towns of Suffolk and Middlesex Counties
VACANT East Norfolk County, Wellesley
Paulina Mauras Southwestern MA
Liz Morin Northwestern MA and surrounding towns of Middlesex County
Chris O'Brien Worcester H-Z, Greater Worcester and Metrowest
Debra Visocchi Middlesex County
Jodi Watson Plymouth County, Cape and the Islands, and surrounding towns of Bristol County
VACANT Boston A-H and Brookline
Welcome to another issue of The Resource, a collaboration between HCAP staff, providers and consumers aimed at providing information that can improve your life.
Since the last issue, HCAP has hired a new staff member. Duncan Arden has been managing the Essex county caseload since March 2007. Duncan has many years' experience working in the human services field including home care case management at an elder service agency. Pamela Kramer, our newest Case Manager, joined us in September 2007 but had to resign due to health problems. She was working part-time, sharing coverage of the Bristol/Norfolk county caseload with Katherine Chesebro. Both her caseload and the Boston/Brookline caseload are being covered temporarily by Felix Jordan, Unit Supervisor, while we hire new staff.
Also, we have seen some program growth due to an increase in our state funding level. When the state fiscal year began on July 1, this funding enabled us to move over 100 people off our waiting list and into home care services! We have expanded our base from 1,525 to 1,680 people across the state and we have reduced the average waiting period from over 6 months to about 4 months. As you will see reading through the newsletter, being able to get services to people as early as possible is essential in assisting those in need to remain as healthy as possible.
The staff of the Home Care Assistance Program recently met with staff at the Mass. Department of Public Health's Office on Health and Disability to learn of their initiatives to promote healthy living for people with disabilities. Their work includes looking at ways to decrease health disparities, including better access to health care and fitness facilities, increased use of and access to preventive tests and treatments, and health education. Another area they are working to address is access to smoking to cessation treatments.
We learned smoking is a major issue for people with disabilities; 45% of all cigarettes sold in the U.S. are sold to people with psychiatric disabilities (JAMA), and a DPH survey found 25% of people with disabilities in Massachusetts are smokers, compared to 19% of the general population.
No one disputes the negative effects of smoking on one's health (or WALLET), nor of the impact of second-hand smoke on those who spend time around smokers (like homemakers), yet we all acknowledge that quitting smoking is not easy; most people are not successful on their first attempt to quit. Today, however, there is help. The Mass. Department of Public Health and MassHealth have collaborated to establish the Quitworks Program which provides telephone counseling, assistance in finding and funding the right smoking cessation group and the right medications to help those who are considering, or are ready to quit. Your HCAP Case Manager can make a referral for you, or you can call Quitworks directly at 1-800-879-8678. If you're not ready, but want to learn more, go to www.trytostop.org. No Internet? A good reason to get out to your local public library!
Our staff, as always, is eager to assist you. Please call us at 1-800-223-2559 and ask to speak to your home care case manager if you need help accessing Quitworks, or any other service in the community, Or if you have an experience or resource you'd like to share with us.
What's New with the HCAP?
Submitted by June Hailer, Consumer
The MRC's Home Care Assistance Program (HCAP) maintains a wait-list for those individuals who wish to become active and participating consumers. This wait-list has been extended to eight months or longer, and with an average of 40 individuals being found eligible to receive services per month, this wait-list continues to grow. As a result of this and the longer period of time on the wait-list, we began to wonder how many of these consumers still needed the services of the Home Care Assistance Program. We were also curious as to how many waiting consumers had managed (to some degree) on their own, had a change in their health while waiting for services or had gotten services elsewhere.
To find out some answers to the above, a survey was sent out in May of 2007 and 133 responses were received. It was found that 132 people still needed the services and only one individual was off the list and currently receiving similar services through Elder Affairs.Of the responding consumers, 57% stated there was a change in their situation while they were on the wait-list. To clarify this a little more, 84% stated their health worsened while trying to do some homemaking tasks on their own and 33% pointed out that they had been hospitalized at least once (if not several times) during this waiting period. This is inexcusable.
Even though the HCAP recently saw a $200,000 increase in funding that helped a small percentage of waiting consumers (especially when one takes into account the increase in homemakers' rates and administrative costs), the results of the survey drew the following conclusions. The Home Care Assistance Program is a very necessary service and we need to continue to strongly advocate for additional funding. If we do this, we will reduce the period of time a consumer is on the wait-list. Let's all consider this a priority.
ARCADIA HEALTH CARE SERVICES knows how frightening it is to bring a stranger into your home. Arcadia hopes that by arming you with information, we can take some of the fear away and help you select a top-notch home care provider.
The option of using a home care agency, such as Arcadia Health Care, is that you have the benefit of all our years of experience, screening, qualifying and training of caregivers at various levels of skilled and non-skilled services. We offer Skilled RN services; Personal Care, Chore/Homemaking, transportation and simply companion services and errands. All our staff are screened, tested, reference checked and a criminal background is completed before their hiring process is completed. We are licensed in Massachusetts to provide these services; therefore, this helps ensure high quality, safe care.
A reputable home care company that can answer all the questions you have recognizes the importance of good customer service and will meet your needs. Service is what you want when you are allowing someone to come into your home. If you have a problem, you want to know your concerns will be heard and addressed in a timely manner!
To inquire about home care services with ARCADIA HEALTH CARE, contact any of our five office locations:
. Danvers, MA (978)-777-4530
. Weymouth/Quincy, MA (781)-331-4678
. Dedham, MA (781)467-0099
. Plymouth, MA (508)-224-7521
. Worcester, MA (508)-791-3535
We also invite you to visit our New England web site at: www.arcadianewengland.com or our corporate web site: www.arcadiaservices.com
A careless word may cause strife
A cruel word may wreck a like
A timely word may level stress
A loving word may heal and bless
Abby Road Homemaking
I am very lucky to have had one of my favorite homemakers come back to my apartment a year ago. I have gone through a bad two-year spell of more surgeries and seizures. There is no doubt that these and other things have caused a great deal of stress. But I do respect and appreciate my current homemaker very much. Working with her makes life easier for me to concentrate on other tasks during the rest of the week. Even though she is in my apartment for only a short time, she certainly cannot do everything for me. She is a great assistant who gives me a "jump start" like a battery does to a car.
I wish the homemakers could spend longer periods helping me but I understand finances are not available. Many of my homemakers have offered me great suggestions and ideas. I did the right thing and listened to them. For example, one of my homemakers has a degree in Home Economics just like my degree in Economics from Syracuse University. We had something to talk about. She did a great job helping to rekindle my interest in being well organized and efficient with how to manage my apartment and my daily activities. She helped me get rid of the tendency to be a "pack rat". I have already thrown out many old papers and items that should have been in the garbage a long time ago. Actually, it has become quite a thrill to have so much additional space in my apartment.
Everybody I know encourages me to keep up my daily exercises for my bad leg and the rest of my body. I do this because it is better to empower myself rather than make my life more difficult than it has to be. By overcoming the obstacles of my bad health, it is easier to do my own housework to maintain my independence.
Personal plans can change. I'll be trying some different things in the near future. These days I like to think of the HCAP as my weekly helping hand, not a hand out. The HCAP has been a resource for me, especially helping me do my grocery shopping because I cannot drive and cannot walk without assistance.
My current homemaker is a wonderful person. She is very nice and she does a great job at my place. She has the gift for helping me relax for the rest of the week just by being herself.
"Finding Your Joy and Acting Upon It"
A Way to Break Through the Physical Challenge Blues
Submitted by Bill Pastore, Consumer
So there I was, 45 years old, putting on my clothes after my first MRI. As I walked out to the lobby I heard the technician saying "wait a minute here he is" at which point she hands me the phone and the doctor proceeds to tell me about a 3" tumor that had embedded itself into my spinal cord and that "it must be removed immediately or risk paralysis". Well, having never been sick before and having already planned a 17 day hiking trip to western Canada I thanked him very much and left the next day for my excursion.
Today, I am recovering from two major surgeries to remove two tumors that have developed in my spinal cord since that first MRI. Although I have lost 50% use of my legs and bladder control, live with chronic pain, don't drive, and I haven't found a suitable work situation, I have not lost my zest for life. In fact the bright side of my disability - incomplete paraplegia - has been the new lessons I have been filled with. I've had to learn how to love myself and take care of myself like never before. Although the pain and inconveniences appear insurmountable at times, I always give thanks for the small miracles in my life.
There are four lessons I would like to pass along to anyone newly introduced to a physical challenge or to those that have felt lost and despaired by the seemingly endless injustices that the universe has served:
First, and most important, is meditate or pray or be mindful. Ask for guidance from powers greater than ourselves. Be positive. In spite of my disability I continue to have hope and trust grace will lead me to greater good. And in so doing I feel fulfillment and joy in each and every moment I am on this earth.
Second is doing the exercises that are prescribed by physical therapists and doctors. Even though they seem silly and repetitive they are helping to heal, train and strengthen the body. Daily routines of 15 minutes two or three times a day are best to keep the muscle flexible.
Third is eating properly. When one's body is provided a proper balance of fiber, protein and carbohydrates it heals better. There is more energy for the body and mind to function at a higher level. To me it seems imperative the quality of the food we eat is the foundation from which all healing begins. Proper use of vitamins, cooking with fresh vegetables and trying to avoid "junk" food is at the top of the list.
Last, and most important, look for ways to keep life exciting and new. Take up a hobby, go for a walk, volunteer, go to the "Y" or senior center. Be open to new ideas, don't be so quick to dismiss something that seems unconventional. Whatever it is get out of the house; because I found if I stayed home I get distracted and do no good for myself. So get outside!!!
Because of my inability to negotiate ice and snow, staying in New England was not a preferred option. The thought of being stuck inside scared the heck out of me. Going to Florida or Arizona would cost about $1000 per month and I don't have those kinds of resources available. I prayed and I meditated and finally, an idea: International travel to warm places. Now this seems ridiculous to many, especially my parents, but after much research I found it be less expensive than staying in Massachusetts.
At first I was very hesitant to undertake traveling to far off places but now after 3 trips, I have found that being labeled disabled has its benefits. First, because I have difficulty walking, the airlines provide wheelchair access free of charge from the check-in to the pick-up area, wherever that may be.
When there are connecting flights they meet me at the runway and take me to the next gate. It is really very streamlined. Also, getting through customs and immigration is so much easier because the airline employee pushing the wheelchair bypasses all lines and waiting. In Argentina 2 years ago, there was a line that looked as if it would take hours to get through just for checking in, and then there was security. I made it from check-in to gate area in 20 minutes.
The second advantage is the flight attendants are very friendly and helpful to make me feel comfortable. This makes the long duration of the flights a lot less tedious. Even checking to see if another beverage or blanket is needed, makes it appear as if there is someone who cares about my comfort.
When deciding on a place to travel to I have two primary concerns: one is the climate and the second is the cost of living. I choose a place where I can engage in some activity that will better my character and I surrender to the experience of living my life to its fullest.
The first year I went to Argentina to study Spanish and experience the culture down there. The seasons are opposite to ours so I experienced summer there. It was similar to NE summers, only not quite as wet. I lived with a family, a mom and 3 daughters, and became part of the family: going shopping and to the movies with them, eating dinner together and sharing time in the sun as the kids were on vacation. I studied Spanish in a home school where I paid about $9/hour. That was my biggest expense.
At first I was very shy about public transportation and my mobility so I walked with my two canes everywhere. After time the confidence came in and I ventured onto the buses. What an experience!!! Most of the time there were crowded buses racing through busy city streets. Not much English was spoken so more often than not I preferred to walk. Either way, I met many nice people that were fascinated to hear of my condition and my bravery to travel alone to faraway places, and honored I chose their country to explore.
Last year I spent three months in India, meditating and praying at an Indian ashram. I was one of a handful of physically challenged people there, and I was keeping up with the program. It was such a blessing, experiencing the freedom to take a chance. I was meeting people from all over the world, sharing stories and really enjoying being with a group of like-minded people. At times I felt "normal" and other times all I could do was just accept myself in this body feeling the way it does. India is not as advanced with its technologies when it involves people with disabilities. The roads are very crowded and bumpy. It becomes a challenge to feel mobile. For this reason I stayed at the ashram most of the time I was in India. The experience there was so wholesome the desire to leave was non-existent. Even at the ashram it was sometimes difficult to deal with the crowds that would come to pay respects to the guru.
The traveling experiences have been very beneficial in many areas of my life. They also have offered a whole new avenue to experience growth and confidence within myself from a physical, emotional and spiritual point of view. I have developed a faith I can do anything I set my mind to. In that being proactive about the things I can control (food intake, exercise and attitude) I greatly improve the opportunity for miracles to happen. And although I may not completely overcome this physical challenge, I definitely will not let it prevent me from experiencing life to its fullest - 2 canes in hand. As a result, I am having the most fun I have ever had in my entire life and I am learning to love and accept the circumstances given.
If I can offer any assistance please email: firstname.lastname@example.org
The longer I live, the more I realize the impact of attitude on life. Attitude, to me is more important than facts. It is more important than the past, education, money, circumstances, failure, successes, what other people think or do. It is more important than appearance, giftedness or skill. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past...we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced life is 10% what happens to me and 90% how I react to it. And so it is with you…we are in charge of our ATTITUDE.
Basic utilities (heat and electricity) are a necessity to keeping you healthy, comfortable and safe, especially during the cold winter months. However, paying for utilities may be difficult at times if you are experiencing a financial hardship and have an illness or disability.
Being educated about key protections for basic utilities could prevent your electricity or heat from being shut off if you should encounter such a hardship.
The following are key protections for utility consumers:
- Severe illness: Your utilities cannot be shut off if you have a disability or severe illness (short or long-term) and suffer from a financial hardship. You will be required to get a letter from your doctor documenting your disability or severe illness and send to the utility company. A call from your doctor will be initially acceptable but it must be followed by a letter. You should expect your utilities be restored on the same day. You must also inform the utility company you are experiencing a financial hardship which may need to be documented by a copy of your SSDI/SSI, Medicaid or TAFDC/EAEDC benefit.
- Children under 12 months: Service cannot be terminated if you have a child under 12 months of age residing at home and you are experiencing a financial hardship. Notify your utility company and provide documentation of child's age AND financial hardship.
- Winter Moratorium: If you cannot pay your bill between November 15th and March 15th (sometimes extended to April 15th-30th) and you experience a financial hardship, service will not be terminated. Notify your utility company.
- Persons 65 and over in household: Notify the company if this applies to you. Service should not be terminated.
Payment Plans: All utility consumers are entitled to payment plans allowing you to pay off your bill over several months. Insist on a payment plan with your utility company.
Discount Rates: If you are low-income (200% of federal poverty level or below), you may be eligible for a discounted rate (15-20%). Discount rates are mandated by law- all companies have them.
Apply for fuel assistance via your local community action development program. If you already have fuel assistance, the discount is applied automatically.
To find out where to apply for fuel assistance in your area, contact the Department of Housing and Community Development (1-800-632-8175). Low income households that are not eligible for fuel assistance may be eligible for assistance from the Good Neighbor Energy Fund operated by your local Salvation Army offices; 1-800-334-3047.
In earlier times, I led a very active life. I worked, had family and was a board member on many community and fraternal organizations. For roughly 25 years I played tennis 3-5 days a week year round, both for pleasure as well as business. I played with colleagues and clients, fostering necessary relationships. As a dad, I shared my love for physical activity with my family. I remember playing tennis with my daughter, and teaching her to fish and to ride a bike, so we could do these activities together.
I valued those physical activities for the benefits to my physical and mental health. These activities were a means of controlling stress thereby fostering valuable interactions with family, friends and colleagues.
Then, in 1999 things came to a screeching halt when I began to notice some changes in my physical well-being. What started as intermittent leg pains, rapidly progressed to continued pain, loss of balance, and loss of control of my fine motor skills. I was soon diagnosed with spinal and cerebellar degeneration, for which there is no known cause or cure. After consulting with a neurologist, I came to the conclusion I was at the beginning stages of an evolutionary process that could necessitate the need for a cane, walker and potentially a wheelchair. Soon I could no longer drive and found myself needing a cane to get around. Four months after that diagnosis I also learned I had early stage prostate cancer.
That's when I became the sole host and invitee to my very own "pity party". No longer active, unable to drive, worried about my future, I continuously asked "why me", until a friend finally asked me the reverse. "Why not you" she said, "What makes you think you're above anyone else who has problems?" I struggled to find ways to cope with the losses and changes in my life. I soon decided I needed to make a choice; I could either get on with living, or get on with dying. I chose living. I began to reassess my life, look at and find ways to accept my limitations and to live life to the fullest within those limitations. During this time of struggle, I kept coming back to the Serenity Prayer: "God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference." In this way, I re-evaluated my life, determined that while I could not have the life I had before these diagnoses, I could certainly go on living a good life.
Making the decision to get back into physical activity was not easy. I had been going to physical therapy as recommended by my Primary Care Physician. When insurance coverage for the sessions would run out, my Physical Therapists would give me a list of exercises to do at home. I would do my best to keep up with the regimen, but found it difficult to motivate myself at home alone.
Around the same time, I spent a month vacationing with my family. My brother surprised me with a one month membership in a wellness center near his home. This center had a water aerobics program which I loved and felt the benefits immediately. When I returned home to Boston, I began to look for a similar program. Finding an accessible, affordable fitness program was not easy. While I did not find a water aerobics program, my inquiries did lead me to an excellent resource. For over one year now, I have been a member of the fitness center at the Reggie Lewis Track and Athletic Center in Boston. Among the programs they host is an excellent aerobics and activity resource called Sensational Seniors. This program includes regular exercise classes for seniors and people with disabilities as well as outings and other activities. The participants can modify the exercises to meet their own needs, whether sitting, standing or leaning on a chair. As a member of the Reggie Lewis Track and Athletic Center I can also make use of their indoor track, which is particularly helpful in bad weather. There are also dance, yoga and other classes as well as exercise equipment members can use. What's more, the membership cost is reasonable and it is a short bus ride from my home.
I am adamant about both the tangible and intangible benefits derived from taking a membership in this center. There is a monumental boost to one's mental health and energy level that you get just from interacting with people. Sometimes being around people is the best medicine you can take. But more than that, I am certain I am still able to get around using a cane rather than a walker or wheelchair because of the regular exercise that keeps me in shape.
Moreover, my tremors are better controlled, and as a result I've been able to stop taking one of the medications that had been prescribed for this purpose. No doubt, if I had not found this program I'd be spending my days and nights feeling stiff and sore, and back at that "pity party".
I always try to recognize and live within limitations imposed upon me, ever remembering while life is short, it still remains what you make of it.
For information about the Sensational Seniors Program, or the Reggie Lewis Track and Athletic Center, contact (617) 541-3535.
*For affordable fitness programs, including swimming, the City of Boston, Center for Youth and Families has community centers and community pools throughout Boston Neighborhoods. Membership fees vary by center, but are approximately $40 for an adult for a year, and $15 for adults age 55 and over. For more information call (617) 635-4920 or check www.cityofboston.gov/bcyf/facilities.asp
Also, you can check out your local YMCA. Most Y's offer financial assistance or sliding scale membership fees.
For general information about physical activity and disability, and for listings of programs by state, go to www.ncpad.org for the National Center on Physical Activity and Disability.
MassMATCH (Maximizing Assistive Technology in Consumer's Hands) is a program that puts assistive technology or AT in the hands of consumers with disabilities. AT is any device that assists in maximizing a consumer's independence at home, work, school, or in the community. Consumers may not know what device works best in their environment. Sometimes, a consumer may purchase a very expensive piece of equipment only to find out it really does not work for them. To resolve this problem, MassMatch offers the following services:
- Device Demonstration Program: MassMatch offers a program that allows consumers to explore hundreds of AT devices that meet a variety of needs by visiting the Demonstration and Loan Regional Center. There are 2 demonstration locations in the state.
- Device Short-Term Loan Program: Device loans allow consumers to borrow AT equipment to test prior to purchasing. There are hundreds of devices designed to enhance communication, hearing, vision, activities of daily living and education. Once you decide on a device, you can fill out a form and schedule a pick-up or delivery time of the device. You may borrow a device for 2-4 weeks.
THESE PROGRAMS ARE FREE!!
|For Eastern MA|
Easter Seals Technology and Training Center**
89 South Street, Boston, MA 02111
617-226-2640 or 1-800-244-2756 xt. 634
Katie Krusinski, DLRC Coordinator
Catherine Bly, DLRC Associate
**MBTA ACCESSIBLE FROM SOUTH STATION
|For Western MA|
United Cerebral Palsy of Berkshire County
208 West Street, Pittsfield, MA 01201
Dawn Perroti, AT Demo and Loan Coordinator
USED AT? The AT Exchange in New England: getATstuff
In addition, MassMATCH offers a free AT device exchange program. This program acts like a classified ad where pre-owned AT equipment is listed helping consumers get in contact with sellers or donators. The program allows consumers an opportunity to re-sell or buy AT equipment at a lower cost than purchasing new products. Some examples of AT devices available include: wheelchairs, daily living aids and computers. To buy, donate, or sell used AT equipment, call the toll-free MassMATCH INFO-line at: 1-866-682-9955 OR visit the website at www.getatstuff.com
Lastly, MassMatch and the MRC are looking for your input to see if you are aware of and are using these new AT services and programs. The MRC & MassMatch are offering an online survey at http://webapps.ehs.state.ma.us/mrcassttechsurvey/survey.aspx
If you have a couple of spare minutes, please complete and forward to others!
Submitted by Suzanne Degagne, Service Coordinator
HES (Companion Care)
1 Can of Pureed Pumpkin (the kind you use for pie)
1 Can of Chicken or Vegetable Broth
2-4 Cloves of Garlic, minced
1 Small Onion
1 Tablespoon of Olive Oil
Milk or Cream (to desired consistency)
Salt and Pepper to Taste
Sauté garlic and onions in the olive oil just to release the oils (don't brown). Add the pumpkin and broth and stir until smooth. Simmer until the onion is very tender. Add milk or cream until desired color and consistency. Heat slowly-this soup gets better if it sits or is reheated. Do Not Boil. To garnish, dollop sour cream or plain yogurt, finely chopped chives or chopped apple.
This recipe will warm your heart and soul! This also works well with canned squash!
The Resource Newsletter
Massachusetts Rehabilitation Commission Home Care Assistance Program
27 Wormwood Street, Ste. 600
Boston, MA 02210-1616
Toll Free: 1-800-223-2559
Dr. JudyAnn Bigby
John A. Chappell, Jr.
Deputy Commissioner, Community Services
This information is provided by the Massachusetts Rehabilitation Commission.