Independence With a Disability
July 2008
MILP
Montana Independent Living Project
Promoting Independence for People With Disabilities
Serving: Beaverhead, Broadwater, Deer Lodge, Gallatin, Granite, Jefferson, Lewis & Clark, Madison, Meagher, Park, Powell, Silver Bow, Sweet Grass, and Wheatland counties.
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Be Cool, Be Safe: Summertime Tips
It’s official, as of June 21st, 12:01am, summer is here!
Summer in Montana is short and sweet and already the roads are filling up with convertibles and motorcycles. Boats, PWC’s, RV’s, and ATV’s are popping up everywhere! Yep, school’s out and it’s time for fairs and little league games, fireworks, camping, and fishing trips.
Summertime in Montana can also be hot, dry, and dangerous. MILP would like to take the time to give our readers a few pointers to stay safe in the sun this season:
· Always use sunscreen (at least SPF 15) especially on babies and children,
· Avoid vigorous activity (even swimming) in hot (humid or dry) environments,
· Stay well hydrated—always carry water or an electrolyte solution (i.e. sports drinks),
· Avoid caffeine and alcohol as these may increase your risk of becoming dehydrated,
· Never leave children or pets confined in a vehicle for long periods of time and always leave a window open during short periods of time, and
· Know the signs and symptoms of Heat Related Illnesses and know what to do in the event they occur.
Some milder forms of Heat Related Illness such as heat rash, edema (swelling in legs & hands), tetany (hyperventilation, heat stress), and cramping are non-life threatening and can often be resolved simply by seeking a cool environment, resting and drinking lots of water or an electrolyte solution, such as Gatorade. In the case of cramping, stretching or massaging the area may help.
Heat Exhaustion and Stoke; however, are serious medical emergencies and require immediate medical attention. Symptoms of Heat Exhaustion and Stroke may include: hot, flushed skin; headache; difficulty breathing
; increased heart rate and respiration rate; confusion, anxiety, and severe restlessness; seizures; unconsciousness; and severe vomiting and diarrhea.
If you or a loved one experience any of these symptoms, seek immediate medical help. Treatment for these illnesses consists of rapid cooling and one may administer the following treatments while waiting for assistance:
· Lie down and rest in a cool, shady location,
· Apply ice to the armpits and groin area (Do not immerse in ice),
· Dampen the body and face with water spray or wet sponges or towels,
· Drink water or an electrolyte solution (i.e. sports drinks), and
· Lightly fan the face.
Information provided by www.webMD.com.
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Send Us Your Story!
MILP is now collecting input for our new column Consumer Insight. If you have an idea or experience that you would like to share, please write to us:
Montana Independent Living Project ATTN: Publications
1820 11th Avenue Helena, MT 59601
| Did You Know…
· Iceland consumes more Coca-Cola per capita than any other nation.
· In 1987, American Airlines saved $40,000 by eliminating one olive from every salad served first class.
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Getting Disability Benefits? We Can Help You Get to Work!
MILP is now a participant in Social Security work incentives and Ticket to Work programs. We have trained, certified professionals who can assist you with these programs.
The following is an excerpt from the Social Security Website with a few details on these programs:
If you are getting disability benefits, we have good news for you. Social Security’s work incentives and Ticket to Work programs can help you if you are interested in working.
Special rules make it possible for people receiving Social Security disability benefits or Supplemental Security Income (SSI) to work and still receive monthly payments.
And, if you cannot continue working because of your medical condition, your benefits can start again—you may not have to file a new application.
Work incentives include:
· Continued cash benefits for a time while you work;
· Continued Medicare or Medicaid while you work; and
Help with education, training and rehabilitation to start a new line of work.
The rules are different under Social Security and SSI. We describe the rules under each program in different sections of our booklet.
But, whether you are receiving Social Security or SSI, it is important to let us know promptly
when you start or stop working, or if any other change occurs that could affect your benefits.
The Ticket to Work program may also help you if you would like to work. You can receive vocational rehabilitation, training, job referrals and other employment support services free of charge. You will not undergo medical reviews while you are using the ticket.
You can get more information on the Ticket to Work program by calling 1-866-968-7842 toll-free (TTY 1-866-833-2967). You can also visit the Ticket to Work website at www.socialsecurity.gov/work for more information.
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How MILP is Changing...
“There is nothing wrong with change, if it is in the right direction.”
-Winston Churchill
The world is an ever-changing place, and MILP is no exception! There are lots of changes and plenty of coming and going in all three of MILP’s locations this year.
Staff turnover is always bittersweet with both the loss of long-time friends and colleagues and the inclusion of new people with fresh ideas.
Early in 2008, MILP said goodbye to our long-time Independent Living Specialist in Bozeman, Amy. In her tenure, MILP made leaps and bounds in the Bozeman service area. We all appreciate the great strides that she made in transportation, youth services, and many other projects in Bozeman.
Recently, Kristin, Self-Directed Personal Assistance Services Program Manager in Bozeman, also accepted a position in marketing that will allow her to work with children-her passion.
MILP in Butte is no different. Melissa has resigned from her position as Independent Living Specialist and accepted a position with the State of Montana but will remain at MILP as a Peer Advocate. Melissa continues to provide outstanding service to people with disabilities at MILP and with her community theatre group.
MILP has retooled its Butte and Bozeman branches and is currently recruiting for the positions of Independent Living Specialist/SDPAS Program Manager and Independent Living Technician in Bozeman and Independent Living Technician in Butte. We are also looking to expand our cadre of Peer Advocates in both locations.
Vacancy announcements can be found on the job service website at wsd.dli.mt.gov/local/helena or at www.milp.us.
Helena too, has had some change recently. Our office manager, Mary Ann, has moved away from Helena. We wish her the best of luck in her upcoming marriage and move. We now welcome Sue to our team of administrators and look forward to all the accomplishments her knowledge and experience will bring.
| A Community On The Move
Last quarter, we detailed our goal of planning, developing, and implementing a Transportation Voucher System in our service area. The Transportation Voucher System is a project implemented and developed by people with disabilities to create increased transportation options in Helena and Bozeman.
This quarter we are happy to announce that MILP has been successful on our grant application to the Montana Department of Transportation to fund the beginning stages of this project. The project, which creates transportation voucher models, is set to begin in July and initially involves:
· Recruiting and hiring a Transportation Development Specialist,
· Conducting public community forums to orient, promote, and recruit stakeholders, partners, and consumers, and
· Developing eligibility, recruitment, and selection criteria and processes.
After successfully completing these activities, MILP will move on to:
· Develop a participant manual for policy, procedures, training, funding, and supporting the selected demonstration models,
· Schedule and conduct bi-weekly participant support group meetings to obtain and generate discussion, on-going improvement, monitoring, and feedback, and
· Make available to the Transportation Development Specialist a finalized monograph of the transportation voucher option model to be disseminated and included in Lewis & Clark and Gallatin countys’ 2009 Transportation Coordination Plan.
The final stages of the work-plan involve:
· Identifying and securing the commitment of partners, stakeholders, resources, and funds which allow the demonstration model to be coordinated and sustained in the plan, and
· Presenting at the Transportation Advisory Council meeting for adoption and inclusion to be submitted to the DOT for funding consideration.
MILP staff is animated and eager to move forward with the Transportation Voucher project. MILP encourages individuals with disabilities who either have experience in transportation or are interested in this project to monitor our website, www.milp.us, as we will be soliciting for participants and proposals as needed.
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Introducing Disability Rights Montana
Montana Advocacy Program is changing its name! MAP, an organization in Montana that strives to protect and advocate for the human, legal and civil rights of Montanans with disabilities while advancing dignity, equality, and self-determination, will be celebrating their 31st anniversary this year and with that, they will be changing their name to Disability Rights Montana.
Disability Rights Montana is an organization founded in 1977 and was then titled Developmental Disabilities/Montana Advocacy Program (DD/MAP). With the expansion of funding to advocate for more people in 1985, DD/MAP was able to drop the DD part of their name to become the Montana Advocacy Program that we all know today.
Now, in 2008, MAP will change once again to Disability Rights Montana which both reflects the work that they do more accurately and makes them easier to find in the phone book and online.
For Assistance through Disability Rights Montana call:
(406) 449-2344 or (800) 245-4743
UPCOMING EVENTS
· 2008 Montana Youth Leadership Forum (MYLF) July 14-18 at Carroll College in Helena. Call June Hermanson- (406) 442-2576 for more information
· Disability Rights Montana “Return to Work” seminar Tuesday, September 9, 2008 from 9:00am to 3:00pm at the Helena Red Lion Colonial Hotel. Call Disability Rights Montana- (406) 449-2344 for more information.
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A Gifted Mind
Amyotrophic Lateral Sclerosis (ALS), commonly known in the United States as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects the nerve cells in the brain and spinal cord.
In ALS, the progressive degeneration of motor neurons eventually leads to their death. When these motor neurons die, the brains ability to initiate and control muscle movement is lost.
Through the course of the disease, patients eventually loose all voluntary muscle control. The beginning stages and symptoms of ALS are varied and the sequences and patterns of progression differ from one person to the next, but progressive muscle weakness and paralysis are universally experienced. It is estimated that as few as 10% of those diagnosed will live more than ten years after their diagnosis.
Some common early symptoms include:
· Muscle weakness in hands, arms, legs and the muscles of speech, swallowing, and/or breathing;
· Twitching and cramping of muscles;
· Impaired use of arms and legs; and
· Difficulty speaking or projecting the voice.
In the more advanced stages of the disease, patients may experience shortness of breath, difficulty in breathing and swallowing, and/or total paralysis.
Stephen Hawking, who is an accomplished theoretical physicist and regarded as being among the most influential minds of our time, was diagnosed with ALS in 1963, whereupon doctors told him he would not live more than three years. Since that time, he has risen to the position of Lucasian Professor of Mathematics at Cambridge University, a position once held by Sir Isaac Newton.
Hawking has made phenomenal scientific discoveries, developed globally recognized theories and has received numerous awards in the process. Hawking is credited for:
· Discovering that black holes can emit radiation-1970;
· Producing the “Big Bang” theory-1971;
· Making the “No Boundary” proposal-1983; and
· Publishing his famous work and record-breaking bestseller “A Brief History of Time”-1988.
Through the course of ALS, Hawking has gradually lost the use of his arms, legs, and voice and is now almost completely paralyzed. He uses an electronic voice synthesizer to communicate.
Despite the many challenges of his life, Hawking is quoted describing himself as “Lucky”. Not only has the slow progress of his disease provided time for him to make influential discoveries, it has also afforded time for him to have a “very attractive” family.
When asked about his disability, Stephen Hawking was quoted saying “My body may be confined to this chair, but with the internet, my mind can go to the ends of the earth.”
We all know that not every person with a disability can achieve these great feats; nor can those without disabilities. We at MILP don’t want to set an expectation or to imply that everyone with a disability should strive to conquer the world. We simply admire Stephen Hawking as an individual who persevered over his disability and succeeded in his own way.
MILP believes that it is the prerogative and ability of all people with or without disabilities to pursue success according to their own interests and potential.
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Consumer Insight: Self-Directed Personal Assistance Services
MILP is an active participant in the Medicaid Self Directed Personal Assistance Services (SDPAS) Program. The SDPAS Program is designed especially for consumers who wish to manage their own services by developing a long-term supportive care program in a home setting.
SDPAS services could include assistance with bathing, dressing, grooming, toileting, eating, ambulation, and exercising. Depending on the consumers individual situation, services such as meal preparation, light housekeeping, laundry, grocery shopping, and medical escort may also be available.
MILP recently interviewed SDPAS consumers in an effort to determine the quality and effectiveness of the SDPAS program. The following is an interview with a consumer who was willing to share her opinion of MILP’s SDPAS program with Independence with a Disability readers.
Q. How long have you been a participant in MILP’s SDPAS program?
A. Since July, 2007.
Q. What influenced you to pursue SDPAS services?
A. Encouragement from MILP staff to seek services that better meet my needs as well as the appeal of having reliable help according to my individual needs.
Q. Does MILP’s SDPAS program meet your needs?
A. Yes, very well.
Q. In your opinion, how does Self-Directed Personal Assistance compare with Agency Based services?
A. SDPAS is better for me than Agency Based services because it is more attentive to my individual needs. I have the freedom to flex my schedule as needed and I don’t have to plan my day-to-day activities 48 hours in advance. I like that I can schedule my PCA’s around my recreational time rather than scheduling my life around my PCA’s. SDPAS also provides me the opportunity to bring a PCA with me when I travel, if necessary.
Q. What do you like best about the SDPAS Program?
A. I like having the right to choose my own PCA’s. I also like being able to advise my PCA’s of what my needs are and what is best for me.
Q. Have there been any drawbacks or issues with MILP’s SDPAS program for you?
A. At first, some PCA’s don’t seem to understand that I am their boss and that MILP is more of a payroll agent and they don’t make decisions about my care. It can also be difficult to find backup PCA’s in last-minute situations...although I have never been left stranded with SDPAS.
Q. How would you rate your overall satisfaction with the SDPAS Program; on a scale of 1 to 10 with 1 being the worst and 10 being the best?
A. 8
Comments:
“I would recommend the SDPAS program to anyone who has thought of going Self-Direct but has been hesitant. I was also hesitant to switch, but now I am doing very well in comparison to Agency Based services.”
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Exercise Your Right; Vote!
Disability Rights Montana is working to promote awareness of equal voting rights and accessibility of polling places.
People with disabilities are traditionally less represented at the polls but the Help America Vote Act has brought big changes to the elections landscape.
In Montana, local elections officials have been working hard to ensure polling places are accessible. Polling places are required by law to provide an AutoMARK ballot-marking machine, allowing equal, independent voter access to the same ballot.
Your opinion matters! Issues of inclusion and access are under direct control of your locally-elected officials. Be sure that they know what you want, by voting.
The following are some tips from Disability Rights Montana on how to make your voice heard.
· Get Registered! You can check your registration status by calling your local election office listed at http://sos.mt.gov/ELB/forms/elections/electionadministrators.pdf
· Learn about the candidates and issues! You are allowed to write down your choices and take this list with you to the polls.
· Find out where to vote! Your voter registration card lists where your polling place is located. If you’ve misplaced your card, call your local election office.
· Don’t erase! If you make a mistake, take the ballot to the election judge and exchange it for a new one.
· Call the Disability Rights Montana Toll-Free Voter Hot Line for information and/or assistance!
(800) 245-4743
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Initiative 159
Service Employees International Union (SEIU), one of the region's more active labor unions, was previously pushing a ballot measure that claimed it could “expand” in-home care for the elderly and disabled in Montana - and allow the union to organize a new pool of in-home care workers. Supporters of initiative 159 stated that it aimed to direct state and federal health care money “away from nursing-home care to in-home care”.
MILP is happy to report that this initiative has been withdrawn and signature counting has ceased. MILP was concerned and in opposition to this initiative as it posed serious consequences for the current services available to the elderly and individuals with disabilities.
The following points depict the arguments against Initiative 159:
· Montana already has a good in-home care system developed jointly by providers (many who are non-profit), advocates, and the state. MILP, along with other Centers for Independent Living in Montana, is a participant in the Medicaid Self-Directed Personal Assistance (SDPAS) Program. The SDPAS program already allows consumers to direct their own care, including hiring, dismissing, training and supervising their caregivers through a co-employment relationship with provider agencies.
· The "individual provider" program, proposed in I-159, could expose consumers to more risk for abuse, neglect, or exploitation because it eliminates the provider agencies and the oversight and accountability functions they perform in the SDPAS program. The “individual provider” program would place the consumer in the role of the employer; making them liable for complying with wage and hour laws, workers compensation regulations, etc.
· The estimated cost for I-159 was $2.6 million the first year, with an increase to $7 million per year within five years. These increased funds would have gone towards increased administrative costs for the state rather than better wages and benefits for caregivers or more services for consumers. There was no money attached to this initiative aimed at nursing home emancipation or shifting funds from the nursing home budget into home and community-based services.
· The mandatory training and background check requirements of I-159 would take away consumer control. In the current SDPAS program, consumers have the choice, ability, and the responsibility to choose and train their caregivers to meet their own individual needs. “Individual providers” would be required to complete mandatory training, background check, and certification requirements each year under I-159. This new approach to training caregivers would mean that consumers would have to spend additional time retraining their caregivers to meet their individual needs.
· The primary purpose of I-159 was to unionize the personal care workforce without giving that workforce the opportunity to vote on whether they wanted to or not. The initiative would have compelled individual providers to join the union and required collective bargaining between the state and the union to determine the "individual providers” wages, hours, working conditions, training, workforce sustainability, and other benefits.
· Consumers would have had absolutely no input into this collective bargaining process, also discouraging consumer control. As the employer of individual providers, consumers have the right to have meaningful involvement in determining the mandatory training requirements and conditions under which their caregivers would work. In this arrangement the workers would not get to choose whether they wanted to form a union, and the employers (consumers) would have no say in the collective bargaining process.
· SEIU developed this ballot initiative on its own accord, with no consideration for input from the disability community, the aging network, the personal assistance provider agencies, in-home care workers, case managers, or state officials administering Montana's long-term-care programs. Montana stakeholders have a right to be involved in the planning and development of new service options and they were not given opportunity to exercise this right with I-159.
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