From the Editor’s Desk
For this issue of the Consumer’s Voice I am giving the Editor’s space over to our Director of Consumer Involvement, Emeka Nwokeji, to share his reflections on the Home Care Assistance Program (HCAP).
At one of our regular management and program staff meetings I was privileged to sit in on an extraordinary budget meeting to discuss the Governor’s 19c budget cuts.
The Executive Office of Health and Human Services (EOHHS) Secretary has asked the Commissioner to conduct an in-house strategy thinking about how and where various statewide programs may carve out some money for rainy day funds. My reason for being there was to gain information, knowledge and solicit input from the Massachusetts Rehabilitation Commission (MRC) stakeholders, but specifically the State Rehabilitation Council (SRC).
Many line items that specifically affect the statewide programs being studied included a favorite program that has continued to be eroded by budget reductions but was level funded this year. The MRC Home Care Assistance Program has intrigued me and though I don’t use the services myself, instinctively, I wanted to be involved in ensuring its future for all of those who do, or will someday, depend on it. If we think of the array of services people with disabilities utilize to live, work and otherwise participate in the community as an eco-system, a change in one aspect can throw the whole system off balance. I want to tell the story as well as the ecological benefits of the Home Care Assistance Program.
First and foremost, let me acknowledge that I have witnessed program participants and advocates share the life saving benefits of the program at EOHHS Secretary public hearings, at the House and Senate Ways and Means public hearings, at the State Rehabilitation Council’s Quarterly public meetings and lastly at the public forum conducted and facilitated by the MRC/Consumer Involvement program public engagements held in the VR districts. I am proud to provide the following testimonies;
Ms. June Hailer, Pittsfield, MA, testified before Secretary JudyAnn Bigby on 12/13/2012 “What we do need is what the Home Care Assistance program provides-I can’t push my wheelchair and vacuum, or push a bucket of water around while I mop, or shop for food and carry bags of groceries around or cook on the inaccessible stove I have. Therefore, I, like others, only need help with meal preparation, shopping, laundry, light house cleaning, dusting and taking out the trash.”
Ms. Brenda A. Rogers, Registered Nurse Practitioner testified “The program increases personal safety and is a guard against falls, disease and future morbidity. The focus of the program is having safety and applying self care skills to live one week to the next. The role of the homemaker is central in supporting the younger disabled person in maintaining housing and a sense of control.”
Our Commissioner has received many notes from program participants and I chose to share the statement below:
“Having the services has allowed me to focus my attention on my therapy where I have been making improvements by leaps and bounds. I must say it’s just nice to have clean clothes to wear.”
If these testimonies are not moving then let’s look at the eco-system of the Home Care Program. My thinking leads me to share the Commissioner’s goals and how the above-quoted consumers embody that spirit.
“The goal of our services is to promote dignity through employment and community living, one person at a time. We hope that all citizens with disabilities in Massachusetts will have the opportunity to contribute as a productive member of their community and family as a result of services provided by the MRC.”
The Home Care Assistance Program was transferred to the MRC as far back as 1986, from the Department of Social Services (now called the Department of Children and Families). As you get to read about this program from the eco- system point of view and other contributing writers, I would like to acknowledge the hard work of the case managers in the HCAP. They are the glue that hold the provisions of homecare services and its network together. They are always there to assist the consumer and the care providing agencies by streamlining numerous difficult internal processes to save taxpayers’ money and enhance service delivery. In addition, they bring with them the ethics of recognizing the network of providers including, but not limited to, the community nurses who carry out the home evaluations and the home care providers who hire the care givers.
All empirical evidence of the benefits of the program point to enrichments in the quality of life for people with disabilities. When all people are able to participate and contribute in society everyone benefits. We witness real community life and the economy bolstered by a strong labor force and consumerism. Ms. Hailer’s testimony goes further and illustrates this: “Finally, the Home Care Assistance Program has allowed me (for over 23 years) and other consumers of the HCAP to be employed and to keep us so. We are productive, active and involved members of our communities like everyone else, in part because of this program.”
My quest makes me inquire what home care is. The term home care is used to distinguish non medical or custodial care such care that is provided in your home by people who are not doctors, nurses or other licensed medical professionals.
The MRC Home Care Assistance Program promotes, maintains and restores quality of life by reducing the effects of disability and creating a natural satisfaction that comes with the support that enables a person to live independently in their community of choice.
The MRC Home Care Program case managers in conjunction with Home Care Agencies are helping citizens of the Commonwealth with disabilities to live safe independent lives. Through the MRC Home Care Program they have acquired the tenacity to overcome the impact of poverty, violence, falls and illness that lead to expensive emergency room visits at a minimal care-cost.
The benefits speak volumes in our society of consumers, employers and sales/revenue generators. We are glad to acknowledge that the Governor and our Legislators find the program profitable from the eco-system point of view too.
Memorial for Sybil Feldman
Sybil Feldman would have thoroughly enjoyed the party given in her honor Jan. 4th. Although the intent was to honor her unwavering commitment to ensuring the civil rights of people with disabilities, the memorial for the deceased 73-year-old activist turned into all that as well as an emotional feel good event.
A biting winter wind didn’t deter the 100 people who walked and strolled to SEIU’s Assembly Hall on West Street in Boston. Upon entering the large Hall, three tables greeted friends and visitors that held dozens of photos displaying Sybil’s life from youth through adulthood. One table showed her numerous commendations and advocacy awards from the five decades she actively advocated in Boston and elsewhere.
Another table held both the program for the three-hour memorial and an assortment of pins and buttons Sybil collected over four decades. Campaign buttons proudly supporting Bobby Kennedy and brother Teddy, John Kerry, and Bill Clinton. Then the personal activist side of Sybil shone in the myriad colorful and interesting worded buttons.
Adjacent to a PowerPoint projector and screen with microphone stand set a vast variety of baked goods and beverages for all to enjoy. Attendees were encouraged to “take some home” and were reminded that “Sybil would approve.” Indeed.
One of my favorite photos shows Sybil’s father holding her in his arms happily smiling as she smiled widely at the photographer. “Sybil adored her father as much as he adored her,” explained a woman who met Sybil in 1978. Sybil’s family predeceased her yet her PCAs and fellow activist friends became her family – some kept a bedside vigil until Sybil passed away the night before Thanksgiving. Her funeral was held in early December at St. Mary of the Assumption Church in Brookline.
BCIL Executive Director Bill Henning hosted Sybil’s memorial at Assembly Hall. He gave a brief presentation then walked around the large room with roving microphone encouraging anybody to speak freely of their remembrances of Sybil. Occasionally, Bill peppered attendees with fascinating asides that drew laughter and quiet reflection.
I arrived early to capture the atmosphere. I saw Bill arranging black and white photos that show Sybil as a youngster and young woman without her power chair. That pleasantly surprised me. I assumed she always used a wheelchair for mobility. A few photos highlight a 20-ish Sybil standing beachside! Another has her in motion on a grassy yard. Others depict her inside Fernald, where she was imprisoned for nearly 22 years.
Bill freely answered several questions as he delicately affixed photos and the awards and commendations of Sybil’s storied activism. I grew intensely interested in a woman I saw frequently at the State House or at a Boston-based advocacy event or meeting. While I always nodded my head acknowledging her or she’d say hello first, I never knew the human side of her troubled yet remarkable life story.
“You never truly know a person until after they’ve died,” Bill quipped. He knew Sybil for more than 20 years and credits her for enlightening him during his 30-year career. “Sybil was my credibility. I speak out on disability rights a lot. My message has been driven by the spirit of people such as Sybil,” he explained in his eulogy.
Another longtime friend, Jason Rosenberg, vividly recalled Sybil in a lengthy e-mail he sent me a few days after her death. “In the early 1970s, Sybil would spend time in the Garden City Activity Center in Newton sponsored by the UCP. The center invited people with cerebral palsy from institutions for socialization, fun, enrichment, for all the things missing from Fernald.”
Jason was fresh out of law school and a member of the Activity Center’s board of directors when he first met Sybil. He added: “She helped shatter myths and stereotypes. And on her shoulders and those of her friends stand all who today live independently.”
Sybil’s memorial energized Assembly Hall as attendees using wheelchairs and able-bodied folks alike, who came from nonprofits and state agencies, as well as longtime friends and her PCAs, shared anecdotes, fond and emotional and funny. The roving microphone moved to many individuals eager to tell of their unique time spent with Sybil.
“She never stopped moving. Staying inside her apartment wasn’t an option. She had to be outdoors no matter the season,” exclaimed a dear friend. “Sybil gave me a present every Christmas. You had to open it in front of her. And she’d always smile and ask: ‘Do you like it?” a loyal PCA recalled.
Bill reminded us that the “so-called experts” told parents upon the birth of their children that they’d be better served in the state’s institutions. “It was the 1940s. A different time and Sybil’s parents believed they were doing the right thing by placing their daughter in Fernald,” he said.
A longtime friend and PCA happily shared with the crowd that Sybil was never bitter: “Oh, no! I adored my parents and they adored me. It wasn’t their fault. My mother started the first cerebral palsy center in Boston.”
MRC Commissioner Charlie Carr revealed to those of us who did not know, that Sybil was not allowed to die at home because only a PCA trained and certified in medications could be with Sybil in her final hours.
He emphasized: “I know I want to die at home. Maybe Sybil’s situation is the next big advocacy cause we can take on.”
As my time grew short at the memorial, I listened to one more anecdote from Bill Henning. “It wasn’t easy being Sybil. She hated every second at Fernald, which haunted her forever. But she knew how blessed she was to leave that hell hole. So she set out to commit herself to empowering others inside institutions to get free and those at risk of getting dumped in Fernald or some other miserable institution to find housing.”
The common thread at the memorial was that despite Sybil’s brutal honesty and occasional outbursts proved unsettling and misinterpreted by others, it’s her friends and PCAs who knew her best. They took time to learn who she is despite her imperfections.
I witnessed a gathering of goodness that flowed from Sybil’s spirit and touches us still.
Always Remember to Say Thank You Each Day
Elaine McHugh, Editor
As many of you may know my son Cameron is quadriplegic and receives PCA services. For many years, Cameron has had the same dedicated PCA, Christine Sutton. Christine worked for our family 7 days per week. She came on every holiday and was a member of our family. Each evening when she left I always said “see you tomorrow and thank you.”
During Christmas vacation, Christine always returned to her family in Florida. She was very close to her parents and, especially, her sister Katie. This year would be no different, we thought. Christine would leave on December 21st for Florida and return to us in January just after the New Year.
December 21st came and we did our usual schedule. I spoke with her for a few minutes on the way out wishing her and her family a Merry Christmas. I thanked her and said “see you in January.” December 23rd my phone rang. I was surprised to see her parent’s phone number and not Christine’s cell number.
Christine’s Mother Pat was calling us with sad news: Christine had died in her sleep the night before. I was in shock. How does this happen to a healthy woman 37 years old! Our family was devastated. We gathered at our home stunned, unsure what our next steps should be. Our priest came and prayed with our family. We prayed that Christine would be at peace and that her family would find peace as well.
A beautiful person who cared so much for Cameron was gone. Christine was more than a PCA, she was a family member. It was all too much. Everyone who met Christine loved her right away, she just had that sweet and generous spirit so often lacking in today’s world.
I know many of you depend on PCA’s for your daily routine. Sometimes it’s hard to think of the ordinary as a gift. Be grateful for your PCA and always remember to say thank you each day.
Moving On, Perhaps Not
Living with a disability can be and feel complicated. Personal goals can be difficult to achieve. Obstacles can seem not only impossible to overcome but the effort of repeatedly overcoming the same obstacle can be exhausting or frustrating or many other not so nice things. Sometimes knowing helpful people just does not seem to make up for the people who are rude, prejudiced, pitying, over protective, oblivious, know-it-all or God forbid, condescending. Patience, we all know, is a virtue. And people with disabilities often are praised for having it in gallons. However, what if it runs out? The well is bone dry. Our reserves are exhausted. Is our patience forever lost? Without patience to continue to strive for our goals what are our options?
Do we give-up? Who would blame us? Do we lower our expectations of ourselves and go with something, anything we know we can achieve? Do we become non-compliant? Do we forge onward regardless, with the same goals, the same supports, meeting the same obstacles? Do we modify our goals? Do we pick new goals? Perhaps we have done all of the above and had many other responses depending on individuals’ circumstances compounded by individual histories compounded by how well we feel, etc, etc, etc. It’s complicated! Moreover, maybe we feel we are still in the same place or worse.
When is it acceptable to say you don’t want to try anymore, ever? What happens if you actually say these words or some version of them and the people around you don’t believe you or worse, believe you? It’s complicated!
Personally, I have had some goals I could not achieve and made some mistakes that were hard to see, admit to and get out from underneath.
So in this “complicated” life what do we do to live the lives we imagine for ourselves? Of course, there are many answers.
One that might offer a place to start is to be honest with ourselves! Then be honest with those around us. What is the problem or problems in our way? Are we able to deal with them now? Do we have the patience and the emotional, financial, creative and support resources to deal with them?
If not, we can give ourselves permission to let go of a goal for a while. A break can help us come up with fresh ideas without feeling pressure “to achieve”. Try not to worry. Instead, experiment with asking other people if they handled a similar situation. Pretend to be a research student or news reporter and be curious about how people accomplished the goal that has been elusive. In this way, we sometimes discover a different approach toward our goal or solving a difficulty.
A break can give us space to try something entirely different like dancing or people watching or learning about the moon or calling old friends and acquaintances. There are so many interesting things in this world. And if things aren’t working our way why not have a little fun and explore something we might enjoy! Maybe rediscover our smiles and connect with something positive.
Keep in mind that we can check-in with ourselves in the future about those wishes and goals that remain important and meaningful to us. Our future self will likely have a different perspective perhaps shaped by the people we met. Definitely shaped by time and our needs. In the future, our bone dry well of patience will have filled again. These wells usually do.
We always have new opportunities to interact differently with our world. However, when we are stuck, flailing, frustrated, mistaken, judgmental, etc, etc, etc, the opportunities are hidden. Our lives may feel like a barrel of complications, sitting on the sidewalk, under pressure, near exploding while nobody takes notice. Most of us have been there, however, even if we must give up for awhile, remember there is always tomorrow. Rest for today and reenergize for tomorrow.
The Massachusetts Rehabilitation Commission District Consumer Advocacy Council/Knowledge Commons:
The Massachusetts Rehabilitation Commission (MRC) is creating an avenue of community-based engagement through its Consumer Involvement Program (CI). This public engagement is an invitation and an emerging strategy to explore the role of knowledge, enhancing consumer’s/stakeholder’s partnership advocacy in the business of the MRC.
What is the essence of this avenue of public engagement?
In the year 2010, Commissioner Charles Carr requested and directed the State Rehabilitation Council (SRC) and the MRC Consumer Involvement Program to study its structure and revamp their respective practices and align itself to the present fiscal constraints of the state agency serving people with disabilities.
The study led the MRC Consumer Involvement Program to shift its paradigm in the vocational rehabilitation division districts/regions. As a result we created district Knowledge Commons.
A district Knowledge Common is a space/forum where people, as advocates, meet to ask questions and discover new questions to be asked. Most importantly, coming together to serve as a forum for dialogue, shared ideas and connections for a common purpose. In the 3 MRC VR-districts where consumer involvement is practiced as a regional consumer advocacy council, we have renamed it as – District Consumer Advocacy Council (DCAC).
Why create a DCAC?
We plan to use the concept of the Knowledge Commons as a conceptual space, where it is possible to diminish the boundaries, between the wide areas of knowledge creation, forms of knowledge, and the deployment of knowledge. In this DCAC Knowledge Commons, we are better able to collaboratively develop advocacy strategies to address the complex economic and social issues that confront people with disabilities in the districts.
What will you learn at the DCAC Commons?
These are extraordinary times. We live in a complex world that calls us to think and act in new ways in order to work together for social change. Social change challenges us as advocates to ask ourselves important questions.
In the DCAC forums we will be ready to collaborate across sectors, cultures, and disciplines in order to create potential solutions to our pressing problems.
We will be working to shift power relations so we can imagine new ways of using information and resources. We will be asking where knowledge resides.
Who owns it?
In the DCAC Commons, we are prepared to co-create and share knowledge in new and useful ways.
Therefore, at these public engagement forums, we seek co-advocacy collaboration between MRC divisional programs and their larger communities for mutually beneficial exchanges of knowledge and resources in a context of partnership and reciprocity.
Who is invited to these Forums?
We value all community organizing, disability advocates, city and town resident’s knowledge and experts; people with strong democracy based values and civic empowerment; to come address critical societal issues affecting people with disabilities in our districts.
We seek representation from town/city disability commissions, parent advisory councils, special education teachers and practitioners, Independent Living Centers, community based organizations, colleges and universities, parents of youth with disabilities, youths with disabilities, media relations, businesses and employers in the districts, etc.
Our upcoming events:
DCAC forums are held quarterly in varying locations in the South, North and the West VR regions. For more information on the dates and locations for the DCAC forums please contact Lisa Weber by phone at 617-204-3638 or email email@example.com.
West Suburban YMCA of Newton Multi-Month Art Exhibit Featuring the Artists Beyond Challenges
The West Suburban YMCA of Newton recently hosted a multi-month exhibit which showcased the artwork of the Massachusetts Rehabilitation Commission’s (MRC) Artists Beyond Challenges (ABC). The artists held an opening reception to introduce the exhibit. Many of the participants hosted tables filled with crafts and artwork for sale.
Artists mingled with attendees discussing their art work while making sales. Everyone enjoyed refreshments and the festive holiday atmosphere.
The day was very successful. So much so that representatives from other venues have already asked the ABC to put on a similar event at their location. Our time at the West Suburban YMCA was worth the work and a wonderful experience. We look forward to new opportunities in the future.
Artists Beyond Challenges is a diverse group of artists working with the Massachusetts Rehabilitation Commission to achieve professional development, self support, and independence through exhibitions, networking and marketing. Artists who reside in Massachusetts and have a disability are welcome to join the group as new members. We welcome all other individuals to join as advocates.
For more information and/or to join our mailing list, please contact: Lisa Weber, Program Coordinator, at firstname.lastname@example.org or (617) 204- 3638
Metro West Center for Independent Living Awards (MWCIL)
The first annual Independent Living Awards and Fundraiser Gala was a fun evening at the Sheraton Tara on November 30, 2012. The event was a chance for Independent Living (IL) advocates to meet, share ideas, and honor our awardees.
The MetroWest Center for Independent Living’s 2012 Independent Living Lifetime Achievement Award was presented to Commissioner Charles Carr in recognition of his career of leadership and commitment to advancing the civil and human rights of people with disabilities.
Commissioner Carr has been at the helm of the MRC for the past five years, and dedicated his entire career as an advocate for advancing independence for people with disabilities. Even now, almost 40 years after he "escaped,” you can hear the emotion in his voice when he talks about living in an institution. He understands the importance of independence, and how it takes grass roots and establishment people to effect change. As commissioner, he is in a position to make a big difference for people with disabilities.
As stated in Commissioner Carr’s closing remarks "Not one person who will come up here tonight and accept an award does it alone. “ That just isn't the way things happen. The way that we do it is with our friends. It is with the people that we know. The people that we don't know. The people that we love. Maybe even the people that we don't like. But whatever it takes to get the job done. That's what Independent Living is. We are a family. We are a community. We are the whole and the sum of our parts. We are all in this room and everywhere else, including institutionalized. We have a lot of work to do."
Another Lifetime Achievement Award was given to Karen Langley in recognition of her dedicated service in the fields of Independent Living and Assistive Technology to promote the integration of people with disabilities into the community.
Langley, Director of Assistive Technology for the Executive Office of Health and Human Services, began her career at the MRC as a vocational rehabilitation counselor, and has since transferred to the Executive Office of Health and Human Services after developing and managing many programs necessary to promote independent living in the community.
Her accomplishments over the past 34 years are staggering. Karen thanked her bosses and her common theme was that they gave her the autonomy to do the work - not always the case in state government! We are all grateful they recognized and respected her abilities! Karen thanked her family, especially her parents "for the strong values they instilled in me. One of the things I think about my parents is we had to work hard. We were to persevere, we were to play nice, and always treat people with respect. I think I've learned to do that along the way.”
“I also want to thank my husband Charlie. He has taught me how to live gracefully with a disability all these years.” Like Charlie, Karen clearly understands what needs to be done in the arena of Independent Living, and she knows how to get it done. Her current passion is for the development of reuse programs for durable medical equipment and assistive technology.
The MetroWest Center for Independent Living’s 2012 Legislator of the Year Award was presented to Senator Karen E. Spilka, in recognition of her leadership and steadfast advocacy in the Massachusetts legislature on behalf of the disability community.
Senator Spilka, represents Ashland, Framingham, Franklin, Holliston, Hopkinton, Medway and Natick. As State Senator since 2005, and State Representative since 2001, Spilka has worked very hard for MetroWest and for people with disabilities. She fights for any legislation that furthers independence for people with disabilities. Karen's effectiveness stems from her personal understanding as her sister's guardian, her ability to work well with her colleagues, her willingness to work with the local leaders in Independent Living, such as Paul Spooner, and her passion for leveling the playing field for everyone.
Senator Spilka thanked everyone for their work. Not only with the folks that you interact with and help, or yourselves, but you make a difference to us in the Legislature. Whether it is somebody like me who is living it or not, be loud voices. Continue to fight. Continue to come to the State House. Make sure your voice is heard. It is the squeaky wheel that gets things done. And we have made a lot of progress. We still have a way to go as we all know, but I look forward to working with all of you," Spilka said.
Reprinted with permission from Metro West Independent Living Center
Did You Know?
When the administrators of Boston Medical Center (BMC) shuttered its successful 60-year-old Spinal Cord Injury Unit last July over 400 people with spinal cord injuries grew fearful as to where they would continue receiving treatment and care. They simply and rightly needed to know whether they could keep their trusting therapists and physicians.
The good news is that some treatments and services can still be accessed at the Outpatient Clinic at the Preston Family Building at BMC. And one essential aspect of continuing a healthy lifestyle for people who rely on wheelchairs for mobility is the Seating Clinic, which is held on Wednesdays only. Appointments must be secured by a prescription from your physician, then call the Clinic to schedule your appointment.
Another essential in living healthy with a spinal cord injury or other neurological impairment that requires a wheelchair for mobility is the assessment of your equipment. That service no longer exists at the Outpatient Clinic. Contact your vendor for repairs, service, and orders for new wheelchairs, power chairs and other equipment.
Physical Therapist Molly Sebo, who oversees the Outpatient Clinic, encourages people with neurological conditions to contact the Rehabilitation Department at BMC. call 617-638-7869, or go to: www.bmc.org/rehab
Michael Johnson, a young race car driver enrolled in the Mazda Road to Indy development ladder system, is the first disabled race car driver officially licensed by IndyCar. He was gracious enough to grant us an interview.
How did you become interested in racing? “I became interested in racing from my dad. He was racing professionally on motorcycles when I was born. I was at a race track every weekend so I grew to like it. I started racing when I was three years old and haven't looked back since!”
How did your disability occur? “I was racing flat track (motorcycles) in Sarnia, Canada. It was a half mile horse track and I went through the fence coming out of turn 4. When I went through the fence going around 80 mph, I hit the handlebars on the bike so hard it broke my back. I don’t remember all the specifics surrounding the accident, but I remember landing on the ground and that’s when I knew I was paralyzed.”
Can you talk about the modifications to your racecar? Was it difficult to modify the car to meet the technical specifications of the sport? “The modifications to the current race car I'm driving has the brake through the steering shaft. I have to push in on the steering wheel to apply the brakes. The throttle is a paddle on the left side of the steering wheel using a cable mounted to the motor. The clutch is a lever by the left side of the car near my leg that connects to the foot peddle. The shift lever is on the right side of the car and it’s the same as it would be for any other driver. It wasn't difficult to make everything work; we just made sure it worked good for my driving. Once everything was approved by the Mazda Road to Indy series I was good to go. There is always room to improve and we constantly make changes to what I like and what will make it easier for me to do my job.”
What other modifications have you made to your home or personal vehicle? “Some of the modifications we did were making the shower up stairs a little bigger for me and we have a chairlift that goes up the stairs. The only modification I did to my personal vehicle that’s not performance related is the hand controls. It’s a lever that connects to the gas and brake pedal. I push down to accelerate and push in to brake.”
What can we do to support you and your racing/JDC MotorSports? “I think the best way to support me and my racing is to keep spreading the word about racing and what I do! Keep people educated about racing and what’s possible in today’s world! My team (JDC Motorsports) is so great! They know what they’re doing and always like to have a good time!”
Do you have any words of support or suggestions for others who want to follow their dreams? “My best advice for others in my situation is never giving up when something unexpected or challenging comes in your life. Fight through everything and it will pay off in the future! Also, have a goal whether it’s short or long-term. When you have something to work toward it makes challenging situations better!”
Find out more about this exceptional young man at www.michaeljohnsonracing.com
The Homecare Assistance Program of the Massachusetts Rehabilitation Commission
This September I began an internship for my graduate social work program at the Massachusetts Rehabilitation Commission’s Homecare Assistance Program. Admittedly, before starting at MRC this fall I did not even know this program, which provides homemaking services such as light cleaning, laundry, grocery shopping, meal preparation, and medication pick-up to Massachusetts residents between ages 18 and 59 with disabilities of all natures, even existed. During the past few months, however, I have come to understand the often critical role it plays in the lives of the 1300 consumers it serves.
The opportunity to have someone complete the homemaking tasks listed above, as seemingly simple as they may be on the surface, often enables someone with a disability to live independently in his or her own home. By preventing emergency room visits, hospitalizations, and institutionalization in nursing homes and other facilities, the program actually can save the state a great deal of money. The average annualized cost per consumer is about $3,400. Depending on the facility, this cost can be reached within weeks, even days, for someone hospitalized or institutionalized. Perhaps more importantly, the program provides someone with a disability with the ability to remain in the community and in his or her home. Costs and dollar amounts are easy to measure, and certainly provide important information. The impact this program has on the self-esteem, dignity, emotional and physical health, and overall quality of life for the consumers it serves is not as easy to gauge, but it is, no doubt, substantial.
In preparation for writing this article, I combed through a folder of letters such as the one discussed earlier describing the positive impact the program has had on the lives of many residents of Massachusetts. I read countless examples, written not only by consumers, but also by professionals such as social workers and nurses who work with them, of the key role it plays in so many lives.
Unfortunately, the program’s ability to help those in need has been tested by budget cuts. Funding for the program dropped substantially in Fiscal Year 2010 and Fiscal Year 2011, and has decreased by 26 percent since 2008. When I began interning at MRC in September the program had begun placing consumers on a six month waiting list. Soon, the waiting list grew to eight months, and, ultimately, became “indefinite.”
Currently, the program is not taking applicants. And for many, no other options exist to provide this much needed aid. This is a difficult message to relay to those hoping to begin receiving services. Still, many believe strongly enough in its potential to help that they push forward with applications anyway. When I told one mother, who referred her son, who is only in his early twenties but has recently acquired a disability that causes chronic pain, constant fatigue, and cognitive difficulties, about the lengthy waitlist, she was dismayed, but was adamant that he continue applying. In order to remain living independently, he will likely require the services provided by this program for a long time to come.
Nothing has convinced me of this program’s importance more than speaking directly to consumers themselves. I constantly hear how grateful they are for these services. And so many sing the praises of the homemakers who provide them, along with often invaluable kindness and companionship, even if only for a couple of hours a week. It is telling that I did not know of this program at all only a few months ago, but have become completely convinced of its importance and necessity in this short period of time.
My colleague, fellow social work intern Michael Wood, felt so strongly about the need to keep it funded that he chose to testify on its behalf at the recent budget meeting at the State House. As he reminded those present, life is unpredictable, and all of us could someday find ourselves in the position of needing this assistance. Those who currently benefit from its services cannot afford to lose this help.
I would like to end by including a quotation by a consumer named Mary Flaherty. She writes: “As a person with physical as well as mental health and self-esteem issues, this program has been a God-send.” The Homecare Assistance Program of the Massachusetts Rehabilitation Commission truly does have a profoundly positive impact on the lives of many Massachusetts residents.
What the MRC Home Care Assistance Program Means to Me
I am an MRC client with multiple disabilities (mobility, sensory, cognitive and fatigue) using the Home Care Assistance Program for over 20 years. This is a vital service provided by a homemaker. My homemaker does laundry, cleaning and shopping and sometimes meal prep. She is a wonder person who cares about helping people. Without a homemaker I would possibly injure myself or end up in the hospital. It took a serious back injury and hospitalization for me to give in and ask for help. The times I have had to do various home chores like laundry have exacerbated my illness or spinal injuries. Learning limitations is important. I try to learn to pace myself to save energy. I am so grateful for this essential service and my hard working caseworker.
Prevocational Services and Supported Employment Wages
Two primary approaches to preparing people with disabilities for employment have emerged over the past few decades. “Train-then-place” and “Place then train.” “Train then place” is based on the assumption that there are prerequisites to employment and the person with a disability should acquire a general skill set and demonstrate work readiness prior to being placed in a job. Types of services and supports typically provided include assessments, services, personal adjustment, work adjustment, skill training and sheltered employment. These services are provided outside the normal context of integrated competitive employment and are often referred to as prevocational services.
Supported employment (SE) is defined in the Rehabilitation Act of 1973 as “competitive work in integrated work settings, or employment in integrated work settings, in which individuals are working toward competitive work, consistent with the strengths, resources, priorities, concerns, abilities, capabilities, interests, and informed choice of individuals.” Supported employment services typically follow the second approach; “place then train.” The “place then train” approach affords immediate work integration by first placing the individual in a job matched to their interests and preferences, and then providing skill training specific to that job. Services under the “place then train” approach may include; capacity-based assessment of the consumer to aid in job development, on the job assessment and training, transportation, job site accommodations (e.g., reader and interpreter services, rehab technology, personal assistance services, information and referral), long-term follow-along, and other on the job supports. While supported employment is based on the “place then train” approach, often prevocational services are offered to supported employment clients prior to placement.
Since its inception in the mid-1980s, supported employment has grown dramatically despite relatively static spending over the last 20 years. Participation in supported employment programs has steadily increased in the United States. In 1998, the number of all consumers in supported employment was 97,100 and by 2009 117,638. The average cost per participant has been decreasing from $9,300 in 1998 to $6,800 in 2009.
Vocational rehab practitioners and researchers, subscribing to a “zero exclusion criteria,” raise concerns about the effectiveness of prevocational services in supported employment. Opponents of prevocational services doubt that prevocational services lead to any improvement of labor market outcomes.
To improve labor market outcomes, experts in S.E. recommend spending resources on job coaching services rather than pre-employment preparation activities.
In support of this approach, a study used a randomized trial to demonstrate that consumers with disabilities, who were directly placed and trained in integrated settings, earned on average more than consumers who went through the standard vocational rehab system.
Another study that questions the effectiveness of prevocational services shows that consumers with mental health disabilities, who were immediately placed in integrated settings, were more likely to be competitively employed than their counterparts who received prevocational services as part of a stepwise approach.
In theory, prevocational services increase non-job-specific skills that improve consumer attitudes toward work, increases preparedness to work in a competitive environment, and consequently leads to the highest possible wage. However, the inability of some consumers with disabilities to transfer the skills gained via prevocational services may eliminate any positive impact of services on future wages of consumers. Moreover, it could be conjectured that providers may lower expectations of consumers’ work abilities, after prolonged pre-vocational services, and as a result, place consumers in lower paying jobs. Consumers may lower their own work ability expectations after prolonged pre-vocational services and self-select themselves into lower paying jobs. All these factors mask the intended positive effect of pre-vocational services on the hourly wages of consumers.
The main results of the study, after controlling for individual and job characteristics, receipt of pre-vocational services and hourly wages of consumers are negatively correlated regardless of whether the wage censoring issue is accounted for in the empirical model.
Larry Espling’s Commentary:
I am in favor of the “place then train” approach rather than the “train then place” approach. My personal experience of learning how to work when I was young came from my family. My parents gave me real work to do in the house, the store, and outdoors.
All these were real jobs and required that I learn skills. Even through my parents never knew the concept of “place then train” they gave me a good foundation teaching me many tasks when I was young. My parents’ training led to my ability to be self reliant. My self reliance led to getting my education and to a career when I moved from home.
From the article, Prevocational services and supported employment wages, in the Journal of Vocational Rehabilitation, 37 (2012) 119-129, DOI: 10.3233/JVR-2012-0605
Authors: Zafar E. Nazarov, Thomas P. Golden, and Sarah von Schrader.
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Keene State College
B.S., HUMAN RELATIONS, RACE RELATIONS
1974 – 1978
University of New Hampshire
1972 – 1973
This information is provided by the Massachusetts Rehabilitation Commission.