activisMS

Learning to be a Great Self Advocate

2011-11-07T22:08:00.003-05:00

Gabrielle Martino, an Outreach Specialist with Disability Rights NC, gave an excellent presentation titled Learning to be a great Self Advocate at the Eastern NC Chapter's recent Educational Conference: “Living Well with MS: Education, Advocacy, and Support”

To be a great self advocate, I learned it is important to be responsible, to be engaged, to know my rights, keep my emotions out of it, to document everything well, to actively listen to the other party, to be respectful, and to follow up. These skills work on all levels. I feel they will not only help me with my day to day issues but also when meeting with political leaders on all levels. Gabby stressed the need for practice.

Following the Conference, my week started with several opportunities to demonstrate my new skills. I had difficulty having a prescription filled because it was being denied. I went to the pharmacy several times trying calmly to figure out what the problem was. After the problem could not be solved at the pharmacy I went home and called the Pharmacy Benefits Manager. As Gabby suggested I wrote down the name of the person answering my call. I then politely said “Mary I have a problem I was hoping you could help me find a solution to”. She looked into it and explained what I needed to do to allow the prescription to be filled. I thanked her for her help. I then called the pharmacy and explained to the pharmacist, again using her name and being polite what needed to be corrected. Likewise I thanked her for her help.

Also this week, I had an appointment with a new Specialist. I came prepared with notes from my other doctors. I answered his questions without trying to figure out why he was asking or interrupting him. I listened to him carefully as he explained my condition. After he had finished I explained politely my concerns about my health care. I then went home and looked up the condition he described.

i was proud to use these skills so soon after the conference. I was prepared, kept good documentation, asked for what I wanted, listened to the other party, was respectful, and followed-up. The last few tips are especially important because the other party may have a solution you never thought of.

For more information on being a self-advocate with medical professionals and in your community, visit the Society's "Advocate for Yourself" webpage.

--Written by Alex O'Connor

"I'm an MS Activist"

2011-10-11T21:13:00.005-04:00

Have you checked out the National MS Society's federal blog recently? It has a new look and lots of good information to be a better MS Activist. Tonight's blog discusses the approaching deadline for Congressional Committees to submit recommendations for federal deficit reduction to the Joint Select Committee on Deficit Reduction (or "Super Committee"). Most importantly, it gives you as an MS Activist action steps to contact your member of Congress and let them know the importance of MS research programs and maintaining entitlement programs for persons living with disabilities.

Additionally, an earlier blog this month shared the President's proclamation declaring October 2011 as National Disability Employment Awareness Month. The proclamation recognizes the contributions that people with disabilities make every day within our nation’s workforce and society.

Follow msactivist for additional updates from DC and continue to follow activisMS for policy issues important to people living with MS in North and South Carolina.

Court says insurer can't cut veteran's disability

2011-10-10T11:03:00.007-04:00

For the last few years, I have facilitated a group of dedicated veterans living with MS that want to increase awareness about the National MS Society among veterans living with multiple sclerosis. I am very aware I am just staff and these amazing individuals get the job done and make the entryway for me into the VA system. Moreover, they inspire me and teach this daughter of a civil servant the ropes of accessing VA benefits. Because of my position, I have been made a point person for many trying to attain these benefits. I am proud to say that our Veteran Livings with MS website has helped, but all too often I get an e-mail or phone call that shares a story of a veteran that has run into a wall getting their benefits -- especially for those veterans diagnosed with MS after the seven years window has passed since their discharge date.

So this morning when I read this article "Court says insurer can't cut veteran's disability" I was uplifted to learn that if this court decision prevails, Mr. Riley will get his VA benefits and employer disability benefits -- both of which he earned.

And while this isn't exactly good news. it is good to know that the EPA has released a report stating that "the chemical in the LeJeune water is a carcinogen" For many veterans and families, this information provides correlation to the diseases they have lived with since serving at Camp LeJeune. Read the latest article about people responding to the news here. Thank you to veterans advocate Jerry Ensminger for all the work you have done to bring this issue to the forefront. If you are living with MS and were stationed or worked at Camp Lejeune, NC between 1957 and 1987, it is important that you contact and register with the US Navy while research is ongoing.

Senator Hagan Recognized at the Society's Ambassadors Ball

2011-09-20T09:55:00.005-04:00

On September 14, the National Multiple Sclerosis Society paid tribute to North Carolina’s US Senator Kay Hagan. Senator Hagan was recognized alongside Sen. Johnny Isakson (GA), and Representatives Barbara Lee (CA) and Kevin McCarthy (CA) during the National Capital Chapter’s 33rd Annual Ambassadors Ball.

In the Senator’s press release about the recognition, she states “It was truly my honor to attend the National MS Society’s reception among so many people who are working to rid the world of this devastating disease. Multiple Sclerosis affects 10,000 people and their families in North Carolina and 400,000 people nationwide. That is 400,000 too many. By raising awareness of the disease and by working together to foster research and develop programs and services, it is my hope that a potentially life-saving cure and life-altering treatments will be found to help those who are suffering. I will continue to work with my colleagues in Congress and outstanding organizations, such as the National MS Society, to realize those goals.”

Senator Hagan is a member of the Congressional MS Caucus. She is also a cosponsor of the National Neurological Diseases Surveillance System Act, which establishes the first national registries of neurological diseases, including MS, in order to better understand and treat them. Earlier this year, Hagan and Sens. Bob Casey (PA) and Olympia Snowe (ME) introduced a resolution to recognize Multiple Sclerosis Awareness Week during March 14-20 to raise awareness of MS.

The annual Ambassadors Ball has raised over $15 million in support since its inception. Funds support cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.

National MS Society responds to NC Medicaid Cuts

2011-09-09T09:57:00.003-04:00

Today, the N.C. Medical Care Advisory Committee is meeting to discuss how the NC Department of Health Services will address the North Carolina General Assembly's mandated savings in Medicaid. As of October 1, these savings will include denying optical, dental and rehabilitative services to Medicaid beneficiaries.

At the Committee meeting, the National MS Society shared the importance of optical, dental and rehabilitative services essential to people living with MS. We were able to incorporate the story of Tessie Ann Adams of New Bern. Tessie was diagnosed with MS in 2001 on her health and pocketbook. Tessie like many others living on a fixed income with MS depends upon these not so optional Medicaid services to help her live a healthy and independent life.

Tessie also testified recently in a town hall meeting in New Bern, regarding the impact the cuts will have in her life. If you have a story to share on the impact of Medicaid cuts, please contact Abby.emanuelson@nmss.org. And please join us at activisMS for more information on policy issues that impact people living with MS.

Service Dogs: Helping Those With Disabilities

2011-07-28T14:09:00.000-04:00

Service dogs are specifically trained in order to help assist those living with disabilities. They can be trained to “work with people who use power or manual wheelchairs, have balance issues, have various types of autism, need seizure alert or response, need to be alerted to other medical issues like low blood sugar, or have psychiatric disabilities”.

In 2009, Congress authorized the “VA to provide service dogs for the aid of
persons with mental illnesses by amending” an already existing bill that only authorized seeing-eye dogs.

The Department of Veterans Affairs states, “We believe that providing service dogs under the statute necessarily includes providing veterinary treatment and hardware, and repairs to such hardware, required by the dog to perform in service to theveteran. Consistent with this interpretation of our statutory authority,
we propose to authorize payments for the care of service dogs that will help maintain the dogs’ ability to perform as service dogs”.

Service dogs not only physically assist those with disabilities but they also make many feel much more comfortable when they leave the privacy of their homes.

Check out more information here: Service Dogs Info
Another viable option for those living with disabilities are therapy dogs. Although therapy dogs are not covered by the VA they are widely utilized by those living with disabilities and people with other ailments.

Therapy Dogs are trained to provide affection and to be comforting to those that they encounter. Therapy dogs are often taken into hospitals, hospice centers, nursing homes and even after school programs. Therapy dogs have several benefits such as lowering blood pressure, stress levels, decreasing pain, improving confidence and comfort.

For more information check out: Therapy Dogs International

In-Home Care Seen As "A Chance To Be Independent Again"

2011-07-21T13:59:00.001-04:00

For many, a home is "where you are not in prison. Where you don't have to have somebody to tell you what you can do, when you can do it and how you can do it". Being able to be cared for at "home" is much more preferable to many than being placed in a nursing home.

For Rosa Hendrix, who was interviewed by NPR, she said that not being in a nursing home "makes you feel so much better and know that you are somebody".

Rosa was placed, temporarily, in a nursing home for therapy after a bad fall, in which, she injured her leg. However, her temporary stay lasted much longer than planned when her therapy took longer than first expected. "Her Social Security check, which paid the rent on her subsidized apartment, was diverted to pay for the nursing home room. As a result, she lost her apartment and then had no home to go back to, nor family to help her".

An NPR study found out that, unfortunately, Rosa's story is all to common for many of those living in nursing homes.

Legislation such as SB 574 have made in-home care easier on the recipient and caregiver alike. SB 574 provides a tax credit to individuals providing in-home care to senior and disabled relatives.
Also, HB 887 which allows a caregiver to use their ownl personal land, zoned as a single-family lot, to care for a mentally or physically impaired person has greatly eased the process of providing in-home care.

For more of the story check out the link to NPR: "A Chance To Be Independent Again"

More Clarity Surrounding Housing Choice Vouchers (HCV's)

2011-07-18T12:44:00.000-04:00

Since 1997, Housing Choice Vouchers (HCV) have been awarded to provide rental assistance, specifically for non-elderly disabled (NED) families. “HCVs for NED families have been awarded under various special purpose HCV programs: Rental Assistance for Non-Elderly Persons with Disabilities in Support of Designated Housing Plans (Designated Housing); Rental Assistance for Non-Elderly Persons with Disabilities Related to Certain Types of Section 8 Project-Based Developments (Certain Developments); One-Year Mainstream Housing Opportunities for Persons with Disabilities and the Project Access Pilot Program (formerly Access Housing 2000)”.

In the past, however, there have been issues regarding the tracking and issuing of these vouchers. Now, these issues have been clearly addressed by the U.S. Department of Housing and Urban Development (HUD).

For more information follow the link to the HUD website : HUD

In other news, the following three bills have been introduced at the North Carolina General Assembly but not yet voted on:

HB 71-Housing Funds for Individuals with Disabilities: This bill seeks $10 million for the North Carolina Housing Trust Fund to increase housing options for people with disabilities

HB 887-Zoning/Temporary family Health Care Structures: seeks to allow “temporary family health care structures” used by a caregiver in providing care for a mentally or physically impaired person on property owned or occupied by the caregiver as the caregiver's residence as a permitted accessory use in any single-family residential zoning district on lots zoned for single-family detached dwellings

HB 818, Modify Disabled Vet Property tax Exemption: seeks to enhance the Disabled Veteran property tax homestead exclusion for combat-related disabled veterans.

Legislation Related to Housing

MS Activists Participate in MS Mud Run

2011-07-13T10:37:00.044-04:00

Jessica Thomas is a chapter program and service manager for the Central NC Chapter of the National MS Society and an MS activist. She has also been living with MS for over five years. Despite battling various MS related symptoms including fatigue and numbness, Thomas has found ways to stay active and positive.

Thomas worked hard to find the right medicines to alleviate her symptoms. "I have had a year of zero problems," she said. "I am doing well and have been able to stay on my MS medication uninterrupted."

MS Advocacy Day with Sen. Brunsetter at the Legislature

“There is no cure for MS. You can only do disease modifying to help stop the progression," said Thomas. "That’s why it is important to get on medication as soon as possible when you have been diagnosed.”

Being able to maintain her medication for the past year, she has been able to resume a more normal lifestyle.

She has even started running. "I have been amazed in how much I have enjoyed this activity," said Thomas.

Melissa Miedema, Jessica Thomas, and Bonnie Nevin

Bonnie Nevin is a friend and colleague of Thomas' at the MS Society. Nevin and Thomas are planning on participating in Mud Run together. They recently participated in the Marine Corps 5k Mud Run to prepare themselves for the MS Society's 10k.

The Mud Run is an "adventure course" featuring boot-camp style obstacles surrounded by or consisting entirely of mud.

“Imagine going back to when you were nine-year-olds and the feeling of adventure you had when you played with your childhood friends climbing trees, trekking through streams, rolling down hills and not caring about getting a scraped knee or a little dirt on your face,” Nevin said. “Mud Run MS gives you that feeling and then some!”

Read full article here.

Improving Raleigh's Bus Transit System

2011-07-12T14:46:00.000-04:00

The City of Raleigh urges all citizens to "Please help shape the future of our bus system by taking the t. The survey requests your input on bus services, facilities and amenities. The survey takes approximately 10 minutes to complete and will remain open until July 31."

Take the survey here: RaleighBusSurvey

It's a simple survey designed to increase user feedback on the Raleigh Bus Transit System. The City of Raleigh and other groups are currently working to provide a "long-term Capital Area Bus Transit Development Plan and a Three-Year Bus Service Plan."

These new plans, once implemented, will provide greater access to transportation around the city and surrounding areas. Make sure you get on the website and provide your input!

Strategies Align

2011-07-01T14:19:00.003-04:00

Two objectives of the National MS Society’s Strategic Response include (1) improving access to care and (2) community collaborations. Thus when the opportunity to participate in the Institute for Emerging Issues’ fourth and final Community Forum on Growing the Health Workforce, we got on the road to Rocky Mount. This forum focused on the role of health care professions (from allied health to direct care workers to pharmaceutical plant workers) have in sustaining economy and providing access to health care in eastern NC.

While the Emerging Issues’ February 2011 report notes the critical shortages of family physicians, nurses, pharmacists, dentists and mental health professions, the forum in Rocky Mount focused quite a bit on allied health professionals. “Allied health professionals comprise the largest proportion of the health care workforce in North Carolina” according to the AH Job Vacancy Tracking Report (May 2011). Allied health professionals include Occupational, Physical, Respiratory and Speech Therapists. As noted in previous activisMS blogs, growing the field of physical therapists and especially those specializing in neurology is important for those living with MS and for everyone else. Of interest in this report “30% of NC’s vacancies were for PTs, but demand was much higher in the Southern Regional AHEC where there is not PT program.”

Throughout the meeting opportunities and barriers were highlighted, but most importantly to note the Society is not alone in trying to collaborate to address the health care needs of North Carolinians living with MS.

Shift in Medicare

2011-06-28T11:35:00.000-04:00

This week Medicare turns 45 years old!!! And with this birthday comes a shift in the focus of Medicare.

The Centers for Medicare and Medicaid Services (CMS) state that, "For more than four decades, Medicare has provided health care to millions of seniors and people with disabilities. Traditionally, Medicare’s focus has been treating disease, not preventing it". However, with the Affordable Care Act that is all changing. Under this act the focus is on benefits for preventative care, such as, yearly wellness visits, and making many preventive services and screenings for conditions like diabetes, high cholesterol, and cancer, as well as vaccinations, free for beneficiaries".

"But these new benefits will only be effective if seniors and people with disabilities understand their new rights".

The CMS have put out a great deal of literature to inform citizens of these opportuities in their new campaign entitled “Share the News, Share the Health”-http://medicare.gov/share-the-health/

Family USA has also put out some very helpful information on the following sites:

For Consumers:
FamiliesUSA1
FamiliesUSA2

For Advocates:
FamiliesUSA3
FamiliesUSA4

Make sure to look at the info above and share with anyone you believe it may help!

Supplemental Security Income Is Simply Not Enough

2011-06-24T13:18:00.000-04:00

Research is starting to show what hundreds of thousands of those living with disabilities already know-Supplemental Security Income (SSI), alone, is not enough to survive on. Recent studies have shown that those with disabilities receiving SSI could not afford housing. In fact, “in 2010, there was not one state or community in the nation where a person with a disability receiving SSI could afford to rent modest rental housing without a permanent rental subsidy”.

Even in the states with the cheapest housing, such as South Dakota, “renting a one-bedroom apartment still accounted for 70 percent of the average SSI payment”, leaving only a small portion of money left for other living expenses. The disparity between SSI and housing costs has been increasing over the last decade. In 1998 “the cost of renting an apartment equaled 69 percent of the average SSI benefit, but by 2010 that number grew to 112 percent”.

The question is, what does this growing disparity really mean for those living with disabilities? It means that as many as “1.2 million people with disabilities live in homeless shelters, public institutions, nursing homes and other unsafe or segregated environments”. Many of these people often do not get the proper attention and assistance that they need, resulting in sub-par living conditions.

This problem is not limited to those living with disabilities, many other citizens are affected as well. Its estimated that “700,000 adults with disabilities are living with parents ages 65 or older, in part due to their inability to afford a place of their own”.

The National MS Society has been working closely in coalition with the NC Housing Coalition on making housing in NC more accessible to people living with disabilities and to make in-home care a viable option.

To read the whole story please click here-Paying Rent With SSI

Crossover Week at the NC General Assembly

2011-06-13T14:01:00.002-04:00

The crossover deadline for the NC Senate and House of Representatives was June 9, 2011. This means that in order for any bills to be voted on or discussed in the rest of the session they had to have passed through one Chamber by midnight of June 9. Obviously, with last week being crossover week, it was very hectic at the legislature. We were in and out of committee meetings all week where bills addressing insurance, health care. education and mental health were debated.

For me, the most interesting and impressive meeting was the meeting of the Senate Committee on Mental Health and Youth Services on Thursday. The meeting was more of a public forum than legislator dominated discussion. Constituents from around the state were invited to speak on behalf of the proposed rules and policies and express their personal experiences.

Many of the citizens had family members with mental disabilities and many others were currently or had in the past cared for a family member with a mental disability. They spoke of the importance of funding in order to keep their kids and family members healthy and properly cared for.

In respect to the Senators, they seemed to sincerely care about what the citizens had to say. It was certainly a nice change of pace to see a meeting mostly run by the citizens rather than the politicians, especially when it was a subject that many hold so closely to their heart.

We’ve been extremely busy but so involved that it’s been worth it. This week continues to be equally hectic as we await to see if Gov. Perdue's veto will be overridden or sustained in what legislative leader predict to be the last week of the legislative session.

Bicycle and Pedestrian Safety Questionnaire Results Released

2011-06-13T13:07:00.000-04:00

NCDOT has released the results from their 2011 Statewide Questionnaire on Bicycle and Pedestrian Safety. The survey generated more than 16,000 responses. Some of the findings were:

• 72 percent of the respondents do not feel it is safe to bicycle in their community for recreation or daily needs. A lack of on-road bicycle lanes was cited as the top issue and most-needed safety improvement;
• Less than 43 percent feel it is safe to walk to destinations in their community for daily needs, with a lack of sidewalks cited as the top safety issue; and
• More than 90 percent said having a safe bicycle and pedestrian network contributes to their personal well-being and quality of life.

“Our citizens have sent a strong message about what they want,” said Deputy Secretary of Transit Jim Westmoreland. “The results of this outreach campaign underscore the importance of NCDOT and local communities collaborating on bicycle and pedestrian planning and identifying funding to meet critical needs; and additionally, will play an important role as we develop a plan for our state’s transportation future.”

The highest priority identified was a comprehensive implementation of NCDOT’s Complete Streets Policy at both the state and local level. Adopted in 2009, the policy demonstrates the department’s commitment to designing roads that enable safe access for all users.

The results of these statewide discussions will be used to support planning, decision-making and future investment in the state's bicycle and pedestrian network. Specifically, the results will be incorporated into the department’s 2040 Plan for the state’s future transportation network, which is currently being developed.

The NCDOT also released the Full Press Release and Questionnaire.

Clarksville, TN Mayor Kim McMillan Diagnosed with MS

2011-06-13T11:13:00.003-04:00

Last Tuesday morning, Mayor Kim McMillan announced she has been diagnosed with MS at a Press Conference in Clarksville Tennessee. "My doctor tells me that I am in very good health — and that this will not in any way affect my ability to continue to serve the city of Clarksville and be the best mayor that I can be," McMillan said.

Without going into too much detail about her specific symptoms, McMillan answered questions at the morning news conference. "I had some (symptoms), but I'm doing great now, and doctors have told me that I have a very manageable condition," McMillan said of her own diagnosis.

McMillan does not feel that her diagnosis will interfere with her ability to serve as Mayor and stressed that she remains optimistic. "I have learned as I'm becoming more educated about it that this condition is something that is manageable and you can live with," she said. "It doesn't shorten your life. It doesn't have any negative effects other than what you let it have."

McMillan said she hoped to use her position to give hope to others with the disease.

Cary Disability Task Force Sees Major Inititiative Come to Fruition

2011-06-08T14:37:00.009-04:00

Long-time MS Activist, Cary resident and Chair of the Cary Mayor's Task Force on Disability, Lauren Hoffman saw one of her advocacy initiatives come to fruition. As a result of the long-standing efforts by the task force, in cooperation with Mall management, Cary Towne Center Mall has installed a second accessible door at it's NW entrance. For the last several years, the Task Force and Cary Towne Center's Manager, Christy Alphin, have worked together to make Cary Town Center more accessible. Alphin stated,"the property went above and beyond normal compliance requirements. The addition of the door will provide a convenient and easy access for all our shoppers."

The task force was first started in 2006 with the intent of making Cary a better and more accessible place to live. The group has gained great community recognition and success over the last 5 years. These include additional accessible parking spaces at Cary Towne Center, bicycles for people to use for jobs (with the Employment Security Commission), and an equipment loan program during Cary Spring Daze. An accessible entrance at D & S Cafeteria was also installed thanks to the efforts of CMTFOD member Kathy Davis. . The task force is open to any and all citizens who are interested in making a difference. Visit www.carydisability.org for more information. If you are interested in getting involved in a community group in your area visit here or contact your local National MS Society Chapter at 1-800 FIGHT MS.

"Swiss Exchange" Recipient Visits the NCGA

2011-06-03T13:11:00.007-04:00

Nicole Iten of Zug, Switzerland, is an individual living with MS who won an all expenses paid trip through the National MS Society, Eastern NC Chapter’s “Swiss Exchange.” On May 10, Nicole and her father, Josef Iten and her friend Andreas Tanner were "extended the courtesy of the North Carolina House Gallery" by Speaker Thom Tillis thanks to Representatives Wainwright and Sanderson. The gallery applauded their attendance and at the end of their trip, all stated this was a highlight of their visit. Following the recognition, our Swiss friends were also introduced to Krispy Kreme Doughnuts.

The Swiss Exchange idea began last September during the Bike MS: Historic New Bern Ride, which was part of the City of New Bern's 300th Anniversary celebration. Markus Walther of the Swiss Embassy and the Swiss Consul General Claudio Leoncavallo participated as representatives of New Bern's sister-city Berne, Switzerland. Both men rode over thirty miles through the streets of New Bern during Bike MS: Historic Ride, hosted an information table throughout the weekend, and shared the connection of the two cities with more than 3,000 Bike MS participants.

To further the connections between the National MS Society, the City of New Bern and Switzerland, the National MS Society, Eastern NC Chapter and the Swiss Consulate agreed to host a “Swiss Exchange” to which an individual living with MS and a chaperone in both Switzerland and Eastern NC would trade places for a week and visit one another’s homeland.

In an article posted in the Sun Journal of New Bern, Josef Iten said he and Nicole had reasons to be optimistic, including the awareness of MS in the US. "There is some awareness at home," he said, "but nothing to parallel this in Switzerland." He also noted that in spite of how complicated of a disease MS is, "there is a lot of research going on and there are some signals of hope."

After beginning their week in Raleigh on May 9, 2011, Nicole and her father finished their stay in New Bern.

People With MS Caught in Medicare "Donut Hole" Finding Critical Relief Under Affordable Care Act in Their Costs For Prescription Medications

2011-06-01T14:00:00.001-04:00

As the average cost of MS in the United States is nearly $70,000 a year, with the overall annual economic cost of MS being an estimated $28 billion, people living with MS face high out-of-pocket costs even when covered by health insurance. The high out-of-pocket costs for medical care and treatment create not only a financial burden but also discourage people from starting and staying on therapy, which right now is the best approach available for preventing disease activity in people with relapsing MS, the most common form of the disease.

As part of the millions of Americans receiving their medical coverage through Medicare, people with MS have already begun to benefit from improvements to the Medicare prescription drug program included in the Affordable Care Act and are now receiving a 50% discount on covered brand name medications bought when they are in the "donut hole." This is particularly important for people with MS as there are no generic equivalents at present for any of the FDA approved disease modifying therapies used by the MS population. For those on symptom management therapies where generic drugs are an option, a 7% discount is now being realized.

"To receive the discount for their prescribed medications, no special action is required, as the discount is automatically applied," advises David Chatel, Executive Vice President, Advocacy at the National MS Society. "It is important, however, that our MS constituency on Medicare know of these new cost savings so that they continue with their needed medications."

Approximately 25% of all people in the U.S. living with multiple sclerosis are Medicare beneficiaries, and most of them rely on Medicare prescription drug plans(Part D) for access to their medicines. But because their drug costs can be exceptionally high, many Part D members with MS hit the 'coverage gap' each year. The coverage gap, or so-called "donut hole," is the period when Part D enrollees must pay 100% of their medication costs. In calendar year 2011 that coverage cap occurs when $2,840 has been spent on needed medications. Prescription drug coverage does not resume until the enrollee has incurred $4,550 in out of pocket medication costs bringing them to the Medicare catastrophic coverage level.

This increased financial relief for those stuck in the coverage donut hole builds on the 2010 one-time rebate of $250 given to Medicare Part D enrollees that hit the donut hole. These initial steps are part of the plan to eliminate the donut hole coverage gap by the end of the decade. These important benefits will improve the quality of life and financial stability of families affected by MS.

For the entire story visit the link below:
prnewswire.com

House and Senate Work Together to Avoid Governor's Veto of Budget Proposal

2011-06-01T13:58:00.000-04:00

There is certainly one clear, common denominator in the newly proposed Senate budget: CUTS.

Nearly every program and institution in the state of North Carolina will be subject to increased cuts in funding for the next fiscal year.

Budget Writers of the North Carolina House and Senate worked hard over the holiday weekend to propose a budget they believe is enough of a compromise to avoid a Governor sponsored veto.

On Friday Governor Perdue made it clear that she was not in support of the newly proposed budget. She made over 12 specific objections to the proposed budget by putting "proposed education cuts at the center of her opposition" to the newly proposed budget. PerdueOpposition

The Independent Living Program will remain intact but will receive a substantial decrease in funding of 9%. The language in the proposed budget proclaims that "services will continue to be prioritized so as to avoid institutional care". However, this means that certain "less important" services will need to be cut in order to operate with 9% less funding from the State.

Also, there is a minimum set on the amount of budget savings that must be achieved by the Department of Health and Human Services (DHHS). If this minimum is not met then the DHHS is to "undertake whatever actions necessary" in order to achieve the proposed savings. This includes "eliminating or reducing the level or duration of optional Medicaid services". Such services are an integral part of many peoples lives. They include: physical therapy, speech, hearing and language therapy, occupational therapy, optometrists' services and eyeglasses, and private duty nurses. Optional Services Removed?
Leaders stated that they plan to have a compromise budget fully intact for the Governor by the end of the weekend following votes in the Senate today and tomorrow. The N.C. chapters of the National MS Society represent one of several organizations that have banded together to send a letter to Gov. Perdue asking her to veto the proposed budget which could have detrimental effects to those in need in N.C. Gov's Letter

World MS Day, MS = Success!

2011-05-27T13:28:00.004-04:00

Thank you, MS Activists for the outpouring of responses for e-MS Advocacy Day in celebration of World MS Day on May 25! This year marked the NC Chapters’ third annual e-Advocacy Day. Over 150 emails were sent to our NC elected officials expressing what MS = to you a person living with MS, family or friends of a person living with MS and health care providers who strive to live their best life with MS.

NC legislators received over 150 meaningful and impactful messages, encouraging them to be supportive of people living with MS when passing laws regarding the health and wellness of North Carolinians. Thank you again for submitting what MS = to you. Here is a sampling of the significant messages legislators received.

MS = Knowing I will have a better tomorrow.

MS = A very strong mother. My mother refuses to let MS get the best of her.

MS = the mystery disease.

MS = A life of uncertainty, not knowing how much you health insurance will be.

MS = Being in pain for so long, that I don't remember how it feels to not be in pain.

MS = Meeting new people, discovering new interests and learning to laugh when I’d rather cry.

It is important to continue to share, connect and raise awareness of multiple sclerosis in North Carolina by expressing to your NC elected officials what MS = to you, not only on World MS Day, but every day.

Together, we are a powerful movement, working to create a world free of MS.

To participate in World MS Day 2012, become an MS Advocate to stay informed of upcoming Action Alerts.

Health Benefit Exchange Bill Passed In N.C. House

2011-05-24T12:30:00.003-04:00

HB 115, legislation establishing a health benefit exchange in North Carolina passed the NC House of Representatives yesterday with a 83-34 vote. Those in favor of the bill stated that passing HB 115 was a necessary step in maintaining the integrity of the insurance system in North Carolina. Proponents stated that the bill may not be perfect but that it is a "skeleton" and foundation for a better bill to be composed. The bill is currently on its way to the NC Senate where it awaits further action.

Consumer advocate opponents of the bill, like the National MS Society, NC Chapters continue to believe that it is an "anti-consumer" bill that places far too much power in the hands of insurers. In fact, according to the bill sponsor, HB 115 was largely written by Insurance companies.

During the floor debate, amendments passed unanimously that made the bill more "consumer friendly". One such amendment that was adopted was to provide for "conflict of interest rules and recusal procedures". In essence, these rules and procedures should require anyone with a conflict of interest involved in manners of the board to recuse themselves. Currently, there are two positions on the board reserved for insurers; seemingly this would mean that these Board members would have to remove themselves from all board procedures when representing their own industry. Other problems with HB 115 include, but certainly are not limited to: a user tax,
lack of requirements of clarity, allowed advertising of insurers.

To read the full bill and the roll call votes, visit here.

Please continue checking out the activisMS blog for more updates when HB 115 begins to be heard in the NC Senate.

World MS Day / MS Equals

2011-05-23T23:27:00.004-04:00

Again, in celebration of WorldMSDay, the National MS Society, NC Chapters will host our third annual e-MS Advocacy Day. As part of this global movement we will share, connect and raise awareness of multiple sclerosis in North Carolina. Join virtually with hundreds of MS Activists on Wednesday, May 25 to tell NC legislators what MS = to YOU as a person living with MS, as a friend or family member of a person living with MS or as a MS health care provider. Please use this opportunity to explain how you strive to live your best life with MS.

Contact your legislators HERE during WorldMSDay on Wednesday, May 25 to share what MS EQUALS to You!

After you send your emails to your NC Representative and Senator, continue sharing your support for our global movement by RSVPing to our Facebook Event Page, mentioning @NCActivism and #msequals on Twitter. Throughout Wednesday, progress on the number of messages sent during E-MS Advocacy Day will be posted on @NCActivism and the NC Activism Blog.

New Law Conforming NC Disabilities Act on the Way to the Governor

2011-05-20T13:46:00.001-04:00

Good News! The NC General Assembly passed and sent to the Governor SB384. This bill conforms the state law with recent changes to the federal ADA Amendments Act of 2008. Governor Perdue is expected to sign the bill into law.

With mounting public pressure the NC House delayed a vote on HB115, the state Health Exchange Bill. The NewsObserver reported, Rep. Dockham, (the bills sponsor) indicated that members of the Republican caucus had some questions regarding the bill before bringing it to a full vote on the House floor.

Last week, the NC GOP leadership filed a Friend of the Court brief. The brief supports the recent Florida decision overturning the Affordable Care Act. The case is being reviewed in the U.S. Court of Appeals in Atlanta, Georgia.

State Budget Moving Through NC House

2011-05-03T17:17:00.002-04:00

I have spent most of today listening to the NC House debate their version of the State Budget. To read about the day’s happenings or view the debate, check out wral.com. In earlier reports, it was noted that budget writers of the Health and Human Services subcommittee “found the bulk of its more than $460 million in spending reductions through Medicaid, the federal-state health care program for the poor and disabled.” Rep. Dollar was quoted, "that all Medicaid services not required by the state to provide were preserved.” However, the Budget does direct the Division of Medical Assistance to find savings within Optional and Mandatory Medicaid Services that provide eye care, durable medical equipment, specialized therapies, home health, dental and other services. If savings are not found by next year, optional services may be eliminated.

Also, in the House and Human Services, the House takes the Governors Independent Living Program cuts. This is the budget item that the Society provided supportive testimony. See earlier blog post here. The State Adult Day Care Fund was reduced by $1.1 million each year of the biennium. The budget directs provide priority funding to younger adults.

The Society also follows funding for NC veterans, and I am pleased to report that an amendment passed late this afternoon which restores funding for Veteran County Service Offices which provide benefit counseling for veterans.

MS Activist Trish Miller Provides Testimony to House Insurance Committee

2011-04-25T13:50:00.000-04:00

MS Activist Trish Miller, a small business entrepreneur, spoke her mind on April 19, 2011 about House Bill 115, legislation to establish a Health Benefits Exchange. Trish wants a health benefits exchange that offers easy to understand health insurance plans with clear benefits and value to patients, and is administered by experts and consumers. Further, she declares new taxes in the Exchange will cause prices to rise and only sicker people to sign up for coverage.

Watch Trish’s testimony here:

Trish expressed in person what emails MS Activists have been sending to members of the NC House of Representatives have said. Please continue to contact your Representative and ask that they oppose HB 115 through this link.

Establishing a HBE: Call to Action, Round 2

2011-04-15T12:01:00.000-04:00

On Tuesday, April 12, the North Carolina House of Representatives' Insurance Committee DID hear an explanation of House Bill 115, legislation to establish a Health Benefits Exchange. The bill was modified to further tie the hands of the Governor's appointment to the Board. Furthermore, at least three seats (and potentially more) on the Exchange's board are reserved specifically for health insurers and a health insurance agent – thus health insurers will still be regulating themselves in this new insurance market.

Your NC Representative and the House Insurance Committee still need to hear from you and your concerns that there is no consumer accountability on the exchange. Current legislation prevents the Exchange from requiring that only those plans offered through the Exchange meet consumer-friendly requirements, like being easy to compare and offering easy-to-understand benefits. Without a strong consumer accountable exchange, consumers will continue to have little choice purchasing affordable health care coverage.

Finally this new legislation needs to have a broad base funding stream, not just taxing individuals and employers within the Exchange.
Email your North Carolina Representative through the National MS Society's website to ask them to oppose HB 115.

For more information on establishing a consumer-friendly Health Benefits Exchange in North Carolina, please visit http://www.responsiblehealthcarenc.org./ The North Carolina Chapters of the National MS Society are members of Citizens for Responsible Health Care.

Establishing a Health Benefits Exchange: Call to Action

2011-04-08T15:51:00.010-04:00

On Tuesday, April 12, the North Carolina House of Representatives' Insurance Committee will hear House Bill 115, legislation to establish a Health Benefits Exchange. Under the Affordable Care Act, states are encouraged to establish this new web-based marketplace for individuals and small businesses to purchase health insurance. The Exchange should foster competition to ensure that health insurance is affordable (benefit coverage costs will NOT be based on pre-existing medical conditions) and allow for health plans to be easily comparable.

However, under the current version of HB 115 that recently passed the NC House Health Committee, at least two seats (and possibly more) on the Exchange's board are reserved specifically for health insurers – so health insurers will be regulating themselves in this new insurance market.

Also, as designed in this version of the bill, there is no consumer accountability of the exchange. The legislation prevents the Exchange from requiring plans only be offered that meet consumer-friendly requirements like being easy to compare and offering easy-to-understand benefits. Without a strong consumer accountable exchange, consumers will continue to have little choice purchasing their health coverage.

And finally this new legislation taxes individuals by placing a user fee on exchange small business employer members and those individuals earning more than 400% of the federal poverty level and small businesses.

Email your North Carolina Representative through the National MS Society's website to ask them to oppose HB 115.

For more information on establishing a consumer-friendly Health Benefits Exchange in North Carolina, please visit www.responsiblehealthcarenc.org. The North Carolina Chapters of the National MS Society are members of Citizens for Responsible Health Care.

Disability Rights Bills moving through NC GA

2011-04-07T12:09:00.002-04:00

We are please to announce that several pieces of Disability Rights legislation the Society has been working on, have received favorable support from members of the General Assembly.

SB 248/ HB 249– Update Archaic Disability Terms: SB 248 passed unanimously by both houses in the General Assembly and was sent to the Governor to be signed into law on Tuesday. Please thank legislators who voted in favor of SB 248.

MS Activists with Rep. Susan Fisher on Disability Awareness Day (3/22).

HB 234/SB 468 – Juror Qualifications/Disabilities: HB 234 bill passed in the House last week and passed the full Senate on Tuesday. In addition to legislative visits by MS Activists, the Society advocated favorable passing of the bill on Disability Awareness Day at the General Assembly. Since the bill was amended, HB 234 returns to the House for approval. The adopted amendment clarifies that any person, living with a disability or 72 years or older summoned for jury duty, may request to be excused by filing a signed statement with the court five “business” days prior to the date the person is summoned to appear. We expect an easy passage since the bill passed the Senate unanimously.

SB 384/HB 530 – Conforming Changes/Persons with Disabilities Act: SB 384 conforms North Carolina’s Persons with Disabilities Protection Act to the amended 2008 Americans with Disabilities Act. This bill ensures that individuals who request accommodations and have to appeal have the right to pursue claims in State courts. Since the last posting, both bills have been filed and received bill numbers. In partnership with Disability Rights North Carolina, the Society secured Senate sponsorship of SB 384 which was unanimously passed by the full Senate. The House is now reviewing the bill in committee.

We are anticipating the House and Senate Budget writers to release their version of the budget next week. Please continue to check activisMS for additional legislative updates.

Women of the Affordable Care Act

2011-03-30T09:14:00.001-04:00

Last Thursday, in recognition of March as Women’s History Month and the one year anniversary of the Patient Protection and Affordable Care Act, the Society stood in support of the new federal health care law during a press conference sponsored by Representative Verla Insko.

In addition to saving more than 100,000 North Carolinians $250 each by closing the drug donut hold in Medicare coverage and prohibits caps on lifetime benefits, the conference highlighted the promise of the new federal law for women and how women are being helped right now by the Affordable Care Act.

The Affordable Care Act eliminates co pays for mammograms and preventative care for children. The federal law also bans gender rating to prevent insurers from charging small businesses with a predominately female workforce more for health coverage.

Patricia Galu, a small business entrepreneur, shared the challenges she and her daughter face in running a small business and affording health care for their employees. She spoke about the benefits of how the creation of health exchange/market place in North Carolina, properly administered, could benefit small businesses.

TGIF! Top Tweets of the Week!

2011-03-25T14:25:00.000-04:00

Happy Feel Good Friday! Once again we are posting our 5 Top Tweets of the Week! Follow us on Twitter at @NCActivisMS and you might catch your tweet as one of our Top Tweets of the Week!

RT @KaiserFamFound: This week, health reform celebrates its 1 yr anniversary. Catch up w/ this video http://ow.ly/4fMWe #hcr

Chronic Disease Day at the General Assembly! #MS #ncga #ncpol http://plixi.com/p/86228569

RT @NMSSEasternNC Walk MS events are just around the corner. Here are some FAQs: http://bit.ly/fK1ozq. Have you signed up to walk?

RT @ms_sm_jo: LOOSE CHANGE is such a great idea! http://sheisrunningdownadream.blogspot.com/2011/03/what-whirlwind.html

RT @NMSSmidatlantic Email your Senator and ask them to support S. 597 Increased Access to Neurological Care http://ow.ly/4jCgz

Disability Awareness Day at the NC General Assembly

2011-03-21T16:50:00.002-04:00

The North Carolina Chapters if the National MS Society are proud to participate in tomorrow's Disability Awareness Day at the North Carolina General Assembly.

For people living with MS and other disabilities, many obstacles can inhibit quality of life and community participation. The National MS Society works to remove barriers to physical accessibility, prevent discrimination, and sustain independence. We are working to ensure that members of the NC General Assembly view the following bills favorably:

HB 234 – Juror Qualification/Disabilities: Eliminates statutory language that discriminates against potential jurors who are deaf or hard of hearing, and allows a potential juror living with a disability to disclose their disability in private. For more information and to request your legislator's support see previous post here.

HB 249/ S 248 – Update Archaic Disability Terms: Updates certain terminology used in reference to persons with disabilities. Removes such words as “lunatic”, “dumb” and “crippled” from the General Statues.

HB 71 – Housing Funds for Individuals with Disabilities: Appropriates funds to the NC Housing Trust Fund to finance housing options for individuals with disabilities.

Conforming Persons with Disabilities Act to ADA Amendments Act: Conforms North Carolina’s Persons with Disabilities Protection Act with the 2008 amendments made to the Americans with Disabilities Act (ADA) to ensure that an individual who wishes to pursue claims in state court under the ADA receive the same protections.

Ask Members of the NC House to Support HB 234

2011-03-20T21:49:00.005-04:00

On Thursday, the North Carolina House of Representatives passed HB 234, the Jurors Qualification bill. This legislation attempts for the second year to eliminate statutory language that discriminates against potential jurors who are deaf or hard of hearing. In addition, the legislation adds a section to allow a potential juror living with a disability to disclose their disability in private to let the court know in advance if their disability may interfere with their ability to serve.

The bill has bipartisan support, but may have gotten slowed down due to an amendment that allows for people to ask to be dismissed if they are 66 years or older (currently the age is 72). HB 234 will be up for third and final reading on Tuesday's legislative calendar.

Please thank legislators who voted in favor of the HB 234 last week and asked for their continued support on Tuesday. Please feel free to use the Society website to send an email to your NC Representative.

National MS Society License Plate Update

2011-03-16T16:48:00.002-04:00

What better way to raise awareness about multiple sclerosis and encourage others to join the movement toward a world free of MS, than applying for a brand new MS license plate?! If you haven’t seen them yet, the new MS license plate is now available through the DMV. Check out a photo of a new plate that has already hit the streets below.

Thank you to the first 300 applicants who have made it possible for us to get this far in the process! If you have yet to apply for the NC National MS Society license plate, you can still download an application here and take into the DMV until the website is updated. For those who have already begun to receive their new plates, please remember to turn your old plate into any DMV site or mail them to 3148 Mail Service Center, Raleigh N.C. 27699 and please be sure to include a request for a receipt and your address.

Personalized license plates are making it to the public slow so be among the first to send in a photo of your personalized MS license plate. We would love to see photos! Please send photos to Abby Carter Emanuelson .

TGIF! Top Tweets of the Week

2011-03-11T12:50:00.014-05:00

It’s been a busy week on Capitol Hill in D.C. and at the General Assembly in Raleigh. To stay abreast of what’s going on follow us on Twitter for daily updates. If you tweet and are living with MS in North Carolina, follow us @NCActivisMS. We will follow you back! Happy a Happy Friday and a great weekend!

300 MS activists will gather in DC Mar 7-9 @ 20th annual Public Policy Conference asking legislators for support & funding for research
MS 20th Annual Public Policy Conference in DC priorities http://on.fb.me/ez6O23
RT @vaMScan: Inspired by a NC MS activist at breakfast - 'don't underestimate the strength of your experiences.' @NCactivisMS
RT @nchealthaccess: (VIDEO) Commissioner Wayne Goodwin Speaks at #ncga on Health Exchange/Marketplace http://t.co/qislEaS
RT @wral: Veto override of anti-health care reform fails. RT @NCCapitol: #ncga veto override H2 fails 68-51. Needed 72 to get three-fifths

Is Your MS service-connected?

2011-03-09T15:20:00.001-05:00

Learn how the Nexus letter and connection with a VA service officer can help you.

The National MS Society has long been aware that there are veterans living with MS who are not receiving VA benefits because they were diagnosed post seven years of discharge. Today we bring the experiences of Christopher and Aileen Jones and their use of a VA service officer and the Nexus letter to showcase how important these two things are to helping veterans with MS attain their VA benefits.

Christopher Jones was first diagnosed with MS in 1995, 10 years after he was discharged from service in Korea and 3 years past the 7 year window for processing VA claims for a presumptive condition. Discouraged, Christopher did not file a claim until a year later, after his symptoms progressed. In contacting his local VA, Chris met Pam, a RN and a member of the Society’s Veteran’s Action Leadership Team (VALT). Through Pam, Chris was put in contact with a VA service officer who was able to provide further assistance and expedition of the claim’s process.

A friend who served alongside Chris during his military service wrote a Nexus letter on his behalf documenting observance of Chris’s symptoms. Chris’s wife and caregiver, Aileen, shared that “connecting with Bill (the VA service officer) and providing a Nexus letter in addition to the necessary paperwork were essential in having Christopher’s MS service connected.” In March of 2010, the Jones’s finally received notice approving Christopher’s claim for MS service-connection and awarding benefits retroactive for the initial claim filing for coverage of Christopher’s medications, treatment, and essential equipment.

If you are a veteran living with MS and believe your MS symptoms may be service-connected contact your local VA and register with the National MS Society (1-800 FIGHT MS). The Veterans Action Leadership Team (VALT) is a group of veteran volunteers who work collaboratively to raise awareness of multiple sclerosis and provide further assistance and resources for veterans living with MS.

Society Joins in Announcement of New Coalition (Citizens for Responsible Health Care)

2011-03-04T08:10:00.000-05:00

Wednesday in front of the legislative building, the North Carolina Chapters of the National MS Society joined with a group of pro-consumer health care advocates announcing the forming of a new coalition, Citizens for Responsible Health Care (CRHS). WRAL provided live coverage of the press conference as CRHS spokesperson, Abby Emanuelson of the National MS Society, spoke on behalf of the new coalition in support of an insurance market or health benefits exchanges that will provide valuable coverage to families.

The exchanges can play a significant role in establishing a basic infrastructure that provides for meaningful choice and competition to contain costs and stabilize coverage for all North Carolinians. Secondly, the exchanges should be credible and independent to function as a marketplace for high-value coverage that is transparent, accountable, and responsible to consumers’ needs.

Improvements to Inclusive Health State-Option Considered

2011-03-01T15:46:00.001-05:00

Today the NC House Insurance Committee passed unanimously, HB 138. This bill, sponsored by Rep Dockham, will amend the N.C. Health Insurance Risk Pool Statutes that govern Inclusive Health. These changes will ensure that more North Carolinians living with pre-existing conditions have access to health insurance.

Specifically, the bill provides:

An increase in the number of successive terms of the Board of Directors to ensure that the number of existing Board members to oversee the phasing out of the Pool in 2014 when beneficiaries are transferred into the open market on the Health Benefit Exchange.
Premium subsides for eligible beneficiaries with incomes up to 300% ($32,670 for family of 1) of the federal poverty guideline when the Board deems is fiscally prudent.
Reduction in the rate range from 150- 200% to 135 to 175% of standard rates for individuals charged by other insurers. The rates will be adjusted yearly, during the time of renewal.
Eligibility to NC residents who have not exhausted current COBRA health insurance coverage at a rate exceeding the Pool.
A reduction in the time period from 12 to 6 months that Pool coverage excludes charges and conditions for which advice or care was recommended during the 12 month period preceding coverage by the Pool.

These changes will be effective when it becomes law. The full NC House will next hear HB 138.

Supporting NC’s Independent Living Program

2011-02-23T12:10:00.000-05:00

The National MS Society was one of several organizations and concerned individuals that delivered public comments to the Joint House and Senate Appropriates Subcommittee on the Health and Human Services Budget over the last two days. The Society focused our comments specifically on the importance of the Independent Living (IL) Program within the NC Division of Vocational Rehabilitation.

Last year, in our public policy issue survey, 70 percent of respondents stated that the NC Independent Living Program was the “most important state-funded program to them. While many programs in NC Health and Human Services Budget draw down federal dollars, the Independent Living Program does not.

As released in last week’s budget proposal the Governor recommends reducing the financial eligibility for receiving IL services from 125 percent to 100 percent of the federal poverty level. This 1.77 million dollar reduction would further reduce access to rehabilitation engineering, home and vehicle modifications; independent living skills training and assistive technology and other equipment purchases.

The Society shared the personal story of a gentleman named Tom from Charlotte, who due to the progression of his MS is now a quadriplegic and bed-bound. Funding provided by the NC Division of Vocational Rehabilitation and services provided by the National MS Society, provided Tom access to a hands free device that allows him to use a computer and software program. Provisions, that allowed him to be “reborn and reconnected” to his career and passion in graphic arts.

Since October, services provided by the IL Program budget have been frozen due to the current budget situation. This means more than one thousand individuals living with disabilities are going without equipment and training to stay independent. Diane who lives with MS in Chatham Country is one such individual who had been waiting for accommodations. Diane awaits a ramp to ensure as her MS becomes progressively worse she will be able to maneuver the steps at her home. Thanks to the Society’s collaboration with SWOOP (Strong Women Organizing Outrageous Projects), Diane is now being removed from the Independent Living waiting list; however, hundreds still await funding for services.

Services provided by the Vocational Rehabilitation Independent Living Program to Tom and others living with MS and disabling conditions are essential to a person retaining independence, staying in their homes, and continuing to contribute to North Carolina. NCActivisMS will continue to monitor and provide updates on the budget process as it relates to people living with MS.

Ensuring North Carolina’s Health Benefits Exchange is Accountable to MS Consumers

2011-02-16T12:06:00.002-05:00

The Affordable Care Act calls for each state to set up an “exchange” or marketplace for individuals and small business to shop for health insurance at affordable and competitive rates, regardless of pre-existing conditions. The creation of state exchanges will help extend coverage for all North Carolinians.

The National MS Society, North Carolina Chapters has actively monitored the NC Institute of Medicine’s Health Benefits Exchange Work Group and when necessary will lobby NC legislators with partnering organizations to ensure the development of a health benefits exchange that is accountable to consumers. Recent efforts have centered on the development of strong conflict of interest policies and strong consumer representation on an independent board that will establish the exchange and set the rules for the marketplace.

To learn about the benefits of the exchange and efforts to ensure a consumer-friendly health benefits exchange read today’s Op-Ed article in the News & Observer, Reshaping N.C.'s Health Coverage.

TGIF! Updates and News!

2011-02-11T10:46:00.000-05:00

It has been another busy week in downtown Raleigh as the Governor and General Assembly works to balance the state budget. The Governor is now reporting that the state budget deficit has shrank by almost $1 billion. We anticipate Governor Perdue coming out with her budget next week.

RT @StarNewsOnline Cape Fear Watchdog$: Governor: State budget hole now projected at $2.7 billion http://ow.ly/1bg61b
RT @binker How NC's budget gap shrank by $1 billion: http://ow.ly/3TsYi #ncga #ncpol

Check our tweets announcing the IRS assisting persons with disabilities and new resources available examining data on Medicaid’s long-term services and supports for seniors and persons with disabilities.

RT @KaiserFamFound New resources examine data on Medicaid’s long-term services and supports for seniors and people with disabilities http://ow.ly/3RDRe
Two more months to get your taxes done // RT: @AAPD IRS can assist people with disabilities: http://bit.ly/hAY64L

In other news, U.S. Dept of Health and Human Services Secretary Sebelius has begun to move forward on the Class Act, a new option under the Affordable Care Act that helps persons with disabilities finance long-term services. For more information on the CLASS Act, click here.

Secretary Sebelius Moves CLASS Act Forward http://bit.ly/fppwbJ

Keep following NCACtivisMS from our blog and our Twitter account @NCActivisMS for updates and news for people living with MS in North Carolina! Happy Friday and have a great weekend!

Happy Friday! Top Tweets of the Week!

2011-02-04T09:00:00.006-05:00

It has been a busy week! If you blog or have a Twitter account and are living with MS in North Carolina, NCActivisMS would like to follow you! Request to follow us on Twitter @NCactivisMS to stay up to date on current developments and news pertaining to people living with MS in North Carolina! We will follow you back! Happy Friday!

RT @NMSSEasternNC The Department of Veterans Affairs (VA) has opened a toll-free National Caregiver Support Line to assist... http://fb.me/uu7y8N7v
UNC Researchers recent findings could lead to new treatments in patients who are in the early stages of MS. http://ow.ly/3NutW
RT @mssociety Doctor Challenges Cause Of #MS And Treatment @NPR featuring blogger Wheelchair Kamikaze http://bit.ly/fNGbe1 #MSMonday #CCSVI
RT @politico Jumping into the high-risk pools. http://politi.co/eCdF9w
RT @NCCapitol Good read: MT @jonathankappler: poli sci research on Voter IDs from Western Carolina's Public Policy Institute http://bit.ly/hhJqeK #NCGA

Accessing New MS Medications in Tough Budget Times

2011-02-03T09:25:00.002-05:00

Yesterday, Barry Boardman, Ph.D presented the state’s economic outlook for the rest of year leading into state fiscal year 2012.. The good news is that tax revenues are better than expected, however a truer revenue picture will come in April.

For the last several years as revenues have declined, North Carolina has instituted some cost saving measures. The North Carolina General Assembly gave the Division of Medical Assistance the authority to establish a preferred drug list (PDL). Initially, all MS disease modifying drugs were considered preferred. However, once the first oral medication for MS was approved by the FDA, the PDL panel needed to review the Gilenya and symptom management drug Ampyra. In December, the National MS Society, NC Chapters sent a letter to the review panel requesting that equal access to all of the MS disease modifying medications. The Society “recognizes that the availability of Gilenya as the first oral MS treatment challenges MS clinicians, patients and insurers to consider when and whether a person with MS that is already on a disease modifying therapy should consider switching to a different treatment. The Society believes this decision should be made by a person living with MS in consultation with his or her physician.”

On Friday, January 28, Dr. Ugo Goetzl, chair of the Eastern North Carolina Chapter’s Clinical Advisory Committee, presented oral testimony to PDL panel. The panel took Dr. Goetzl’s expert testimony under heavy consideration and voted to allow physicians to prescribe Gilenya to their patients on Medicaid with prior approval should they experience a site reaction during their injection therapy. For more information on North Carolina Division of Medicaid Assistance’s preferred drug list, visit here:

If you are having trouble accessing new MS medications, contact the National MS Society for information and appeal assistance.

Impact of Voter Photo ID Requirements

2011-01-31T12:17:00.000-05:00

New legislative leadership is moving forward with a campaign promise to require voters to show photo ID next time they show up at the polls to vote. Those for the bill intend that it will reduce voter fraud and according to one representative who sponsored a similar bill in 2009 is “necessary to ensure the integrity of the entire system.”

There are concerns among disability advocates that the current proposal could disproportionately affect the elderly and persons with disabilities if implemented. Persons with disabilities are less likely to have a license and are more likely to face physical and financial difficulty acquiring such, attributed to the fact that some do not drive and already struggle with limited income. In addition many residents of assisted living facilities or nursing homes simply do not have photo IDs.

Furthermore, there is little evidence of voter fraud in North Carolina as reported by the State Elections board (18 cases out of 4.3 million in 2008) which can likely be attributed to current safeguards imbedded in the election process and current North Carolina voting laws. Already on the books are laws that make it a felony in NC for anyone to lie when signing in to vote or vote illegally. North Carolina already requires a valid photo ID when registering to vote and partisan poll observers already have the authority to challenge voters at the polls if they suspect voter fraud.

NCActivisMS will keep you posted on legislative updates pertaining to the issue. For more information visit http://www.democracy-nc.org/.

Together NC's Letter to Governor Perdue

2011-01-25T13:36:00.000-05:00

Last week, The National MS Society joined with more than 120+ members of Together NC to submit a letter to Governor Perdue urging her to “choose a path to the future” in light of a 3.7 million dollar shortfall in the state budget. Together NC “is a broad and diverse collection of non-profit organizations, service providers, and professional associations who have come together to promote wise choices for shared prosperity for all North Carolinians.”

The letter requests Governor Perdue to “take a balanced approach to our state’s fiscal crisis” by producing a budget that includes raising revenue as opposed to taking a cuts-only approach to the state budget. A cuts-only approach would potentially eliminate 15 percent or roughly $600 million from the budget of the Department of Health and Human Services alone, threatening the existence and continuation of several community health services and programs for children, the elderly, and persons with disabilities (Read our entry from December 6, 2010 ).

See Together NC to read the entire letter.

Happy New Year from ActivisMS blog!

2011-01-21T10:56:00.000-05:00

Happy New Year from ActivisMS blog! Continue to follow and interact with us from our blog and @NCActivisMS on Twitter. As we eagerly await the start of the 2011-2012 legislative session on January 26th, we will continue to catch up and inform you of current issues and new changes expected with the new session.

RT @underthedome Bru is back and other House chairs: Former House Speaker Harold Brubaker will be the new chairman of the House A... http://bit.ly/dOteKq

RT @politico Anti-reform Dems (incl. Rep.Shuler) cool to repeal vote - Carrie Budoff Brown and Jennifer Haberkorn .. http://politi.co/hvsJDh

RT @ABC11_WTVD Battle over health care hitting home http://bit.ly/fk7yHf

RT @SenatorBerger Bingham, Blake, and Pate Chairs for Health Care http://bit.ly/fDsRbF #NCGA #NCGOP #ConsNC

RT @Barry_SmithIn the Loop: Hartsell and Rucho tapped to lead Senate Finance Committee. #NCGA #NCPOL http://ht.ly/3xyjZ

TGIF! Top Tweets of the Week!

2010-12-10T09:52:00.000-05:00

Happy Friday! Following us @NCActivisMS on Twitter? Below are the Top Tweets of the week pertaining to people with MS, Medicare, accessible parking, and other great topics!

RT @MSNorthFlorida Roughly 25 – 30% of people with MS rely on Medicare as their primary source of health coverage, and the annual... http://fb.me/C4WQrFqf
"In the past 10 years, adults ages 31 to 64 have been the fastest-growing population in nursing homes." 14% of the nursing home pop. @NPR
RT @asheville: Handicapped parking changes in downtown Asheville evoke split reaction http://ow.ly/1ann9U
RT @AAPD Let's Get Counted: Census Revising Disability Questions http://bit.ly/f6WfWM
15 years after diagnosis, state senator discloses she has MS http://bit.ly/g36hBi

NC State Budget Concerns – What YOU Can Do!

2010-12-06T10:41:00.000-05:00

A $3.3 billion dollar deficit has prompted Governor Perdue to request each state agency to propose 5%, 10% and 15% cuts to reduce state government spending. So what do $3.3 billion dollars in cuts mean for people with MS and other chronic disabling illnesses?

Department of Health and Human Services Secretary Lanier Cansler says a 15 percent reduction for the HHS equates to roughly $600 million, threatening the existence and continuation of several community health services and programs. Several of these proposed cuts include million dollar reductions to funding the Personal Care Services program which provide in-home aid to the elderly and persons with disabilities, funding for basic support case services that assist individuals in obtaining and retaining employment, and reductions to eliminate recreational therapist positions within Independent Living Services. These proposed cuts may very well become reality for the 2011-13 fiscal year if state leaders don’t take a balance approach to the state budget.

The National MS Society along with a diverse group of non-profit organizations, service providers, and professional associations have joined with Together NC, to promote wise choices for shared prosperity for all North Carolinians during a time of severe economic recession. Alternatives to the massive cuts mandate the prioritization of public services and programs that allow all people, including those people with MS and other chronic illnesses to promote the success of stable and thriving families and communities.

We ask you to join others in taking action by signing the Together NC Petition. Tell your governor and state legislators that we are counting on them to take a balanced approach to the state budget – one that includes spending money wisely and raising new revenues.

TGIF! Top Tweets of the Week!

2010-11-26T09:10:00.001-05:00

Happy Black Friday! NCActivisMS hopes you had a wonderful Thanksgiving! If you are not already following us on Twitter @NCActivisMS please add us as we tweet on behalf of the North Carolina Chapters of the National MS Society.

NCActivisMS Blog follower blogs about how thankful she is for her caregiver, her husband http://bit.ly/hH8TPE

RT @Disabilitygov Prepare for holiday travel. Read TSA's Travelers with Disabilities & Medical Conditions fact sheet for tips http://bit.ly/apEKig

RT @MSactivismMN HHS issues medical loss ratios: at least 80% of $$ must go to medical care. http://bit.ly/arlNmP

RT @enableamerica November 29th in Charlotte, NC Gerdau Ameristeel is hosting a Mentoring Day for DAVs. register at our website now -www..enableamerica.org

RT @HHSGov New Affordable Care Act rules give consumers better value for insurance premiums: New regulations issued today b... http://bit.ly/9A1Dz3

A Time to Give Thanks to MS Caregivers

2010-11-23T10:11:00.000-05:00

John F. Kennedy once said that "As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them." November is National Caregiver Month, a time of commemoration within the National MS Society. In the spirit of Thanksgiving, not only is this a time to honor the experiences of those who serve as caregivers but also a reminder that we must continue to relentlessly advocate on their behalf.

Advocacy efforts within the Society have centered on efforts to maximize work balance and accommodations for persons living with MS and their caregivers to permit caregivers the opportunity to care for love ones. Most individuals living with MS rely on some level of assistance from their caregiver to remain active and receive the care they need.

The current state Family Medical Leave Act (FMLA) language covers only a narrow definition of family: parent, spouse, and child; however, this definition does not reflect the structure of many of today’s families and makes it difficult for some caregivers to take the leave they need to care for love ones. Fair and inclusive policies and law are needed to protect and support people with MS and their caregivers.

The National MS Society plan to work legislatively in North Carolina to honor the caregiver’s needs through the expansion of the definition of the Family in FMLA, because we know everyday that siblings are caring for each other….Thus we are actively working with coalition partners for paid sick days and expansion of the definition of family within the FMLA to cover caregivers not listed in the current definition. An expanded definition would include same-sex spouses, domestic partners, parent in laws, adult children, siblings, and grandparents. We also aim to work in coalition to pursue state caregiver tax credits.

Continue to follow NCActivisMS blog for state advocacy updates on FMLA definition expansion during the new legislative session starting in January 2011.

NCActivisMS Top Tweets of the Week!

2010-11-20T10:09:00.000-05:00

Hope you had a great week! NCActivisMS tweets daily on behalf of the NC Chapters of the National MS Society. Follow us at @NCActivisMS for MS news and advocacy updates!

RT @AnnPietrangelo Health Activists: WEGO Health Wants You! - Calling all multiple sclerosis (MS) activists! WEGO Health is inviting yo... http://ow.ly/1a1ZvK

RT @mssociety Email your senator http://bit.ly/Senate1273 for natl tracking on neuro diseases including #MS which will help inform promising #MSresearch.

RT @NMSSIndiana The Society has just committed $14.6 million to support 34 new MS research projects as part of its $36 million... http://fb.me/NSYfYrWc

At the employment session: request a job accommodation no later than you need it to maintain job performance. #MSCarolinaConsortium

RT @vaMScan state advocacy manager just earned her fair housing certification! its a fascinating law and ALL are encouraged to read it

Good News: NC Activism Raises Awareness of Accessible Parking Violations

2010-11-17T19:39:00.003-05:00

You may recall, blog entry A Major Inconvenience Is Really Against the Law which highlighted accessible parking violations. Good news, North Carolina residents have been working to address the issue too (see Raleigh News and Observer article). In response to their activism, the DMV has published a brochure to educate the public on how to properly use a handicap placard, where NOT to park, and the penalties for violating accessible parking laws.

Violations of handicapped parking laws in North Carolina carry fines of $100 to $250 but these often do not deter people from complying with state law. You can pick up copies of this new brochure at DMV offices across the state in addition to downloading them from the DMV website.

The article suggests the following tips to get the word out about accessible parking:

Discretely placing a brochure in the mailbox of an able-bodied co-worker who you observe misusing a relative’s handicapped placard.
Leaving a brochure on the windshield of a car (without a placard) violating accessible parking laws.
Hand them to your local police, and ask them to enforce the law.
Give a few to your favorite shopping mall security officers and encourage them to be vigilant against patrons abusing accessible parking spots.

Please share how you plan to share the brochure in your community.

TGIF! Top Tweets of the Week!

2010-11-12T11:42:00.002-05:00

NCActivisMS wishes you a happy Friday and wants to introduce you to a new weekly feature to the blog! If you are not already following us on Twitter @NCActivisMS please add us as we tweet on behalf of the North Carolina Chapters of the National MS Society.

"Happy Veteran's Day! Thank you for your service to our nation. #veteransday "

"Justice Dept. Reaches Agreement w/ Hilton Worldwide Inc. Over ADA Violations at Hilton Hotels & Hilton Hotel Chains http://bit.ly/bjHfO3 "

"Multiple sclerosis patients work out with robotic devices and video games aimed at improving mobility http://lat.ms/9uA9XX "

"RT @ReeveFoundation RT @aapd: Driving up employment for veterans with disabilities: telesemniar: http://bit.ly/9M0DXV "

"New study: NAC looks at Caregivers of Veterans http://bit.ly/b2gMZ1 "

Continue to follow NCActivisMS on Blogspot and on Twitter for news and advocacy updates!

Economic Impact of MS

2010-11-11T11:29:00.004-05:00

Though most commonly diagnosed among women, MS is often diagnosed among both sexes in midlife between the ages of 20-45 years. During which, the economic impact of MS for most is often magnified when diagnosed during these years. At this life stage, people are working on building a career, raising and educating children, and paying for a mortgage. As people live with MS they often experience rising medical expenses and the possibility of job changes.

Thus there is no denying the fact that some people living with MS often struggle to maintain income and face the threat of a comfortable retirement being held hostage by a progressive illness. So how do most cope with these impending realities?

Research has shown that people appear to cope better if able to take proactive or problem-solving approaches rather than an emotion-focused approach to financial changes. The strategy of one couple nearing retirement –-- stabilize income before the conditions worsens and save more cash to retire.

Just as a person's MS symptoms not exactly like someone else’s, neither is their financial situation. The National MS Society has resources to assist those looking to secure their financial future. Long-term care insurance has been one mechanism to prepare for the future that has often been denied to people living with chronic conditions. The Patient Protection and Affordable Care Act established of a national voluntary insurance program (The CLASS Act) for purchasing community living services and supports to alleviate some of the financial burdens of people living with chronic conditions.

Continue to follow NCActivisMS blog for Society resources and up to date information on the CLASS Act implemented in full effect 2014.

U.S. Dept. of Justice Seeking Input to Amend ADA Regulations

2010-11-08T10:26:00.001-05:00

The U.S. Dept. of Justice is seeking input from consumers and advocates regarding four Advanced Notices of Proposed Rulemaking published this summer. Three public hearings will be held during the following dates and times for interested persons to express views and raise concerns regarding the proposed rules:

Chicago, November 13, 2010
Washington, DC, December 16th
San Francisco, January (TBD)

The U.S. Department of Justice plans to amend its ADA regulations pertaining to (1) accessibility of web sites, (2) movie captioning and video description, (3) next generation 911 , (4) and equipment and furniture.

If you have suggestions to improve accessibility of websites, we encourage to submit comments in writing, speaker telephone, telephone relay service, or video relay service after registering. For additional information about the hearings and registering Click Here.

The NCActivisMS blog is interested in your comments and encourages you to register and present your views to the Dept. of Justice.

TOMORROW is Election Day!

2010-11-01T15:12:00.000-04:00

Change happens through MS activism which a key part of is informing public officials about the challenges of MS. Your vote is one simple way to be an MS Activist.

Voting helps gain political power and enhance the influence of important constituencies. It builds stronger and healthier communities and creates individuals who are more likely to volunteer, advocate, and be active in civic life of their communities. Even more important, voting increases the likelihood that public policies will reflect and represent the needs of our local community.

DON’T FORGET TO VOTE ON TUESDAY, NOVEMBER 2^ND.Polls are open from 6:30 a.m. to 7 p.m. Early registration and voting ended October 30^th, but you still have one more day to make your vote count! Nearly 1 million have already cast ballots their ballot in North Carolina.

REMIND your friends, neighbors, and co-workers and encourage them to be informed about the issues and vote! We must work together to break down barriers to care, improve access to quality health services, and make MS therapies more affordable. We must pursue funding for more MS research and fight for disability rights. MS activists help turn those issues into state and national priorities.

Things to do before you vote!

Find your polling place and check your registration HERE!

Contact your local county board of elections if additional assistive technology is needed to vote privately and independently
Be prepared! View your sample ballot!

2010-10-28T11:28:00.000-04:00

ATTENTION:
Are you living with MS AND have or are attending a community college in North Carolina? Let us know TODAY!

A Major Inconvenience Is Really Against the Law.

2010-10-25T13:03:00.005-04:00

(Courtesy of United Spinal Association)

One would assume that the blue and white accessible parking signs would alert most drivers to NOT park in these spaces; however, Travis County Texas suggests that some do not. Within a six month period, a total of 578 tickets were issued to vehicles parked in accessible parking spaces for various violations. Since 1990 federal guidelines (thanks to the ADA) require businesses and governmental entities to make accommodations for persons with disabilities to allocate a certain number of accessible parking and van unloading spaces. Federal guidelines also require the blue, yellow, or white stripping, but parking on these hash lines is not a punishable violation.

Travis County is not the only locality monitoring and working to address this issue. One man from St. Charles, Illinois is working to educate the public on the importance of accessible spaces, especially those marked for van access. David Huesing, 62, and chairman of the Citizens with Disabilities Advisory Board lives with multiple sclerosis and uses a power wheelchair to overcome mobility issues. Huesing experiences frequent logistic issues when getting in and out of his van when drivers park too closely or on spaces designated for van access. These spaces are typically wider than a standard parking space and include a diagonal stripped extension.

Some websites and blogs also exist to raise awareness by “busting” drivers who park in accessible spaces maintaining that “to some, those blue and white signs mean easy, convenient parking, but to those they're designed for, those spaces are a necessity.” But perhaps, the most effective advocates for educating the public about this issue come directly from the words and images of persons affected, like David Huesing. "See those stripes? Don’t park there.”

Have you experienced the same issues as Mr. Huesing?Are you addressing accessible parking in your community? If so, share what you are doing individually or with a community group.

Why Vote!?

2010-10-08T11:25:00.002-04:00

Your vote is one simple way to be an MS Activist! Voting helps gain political power and enhances the influence of important constituencies . It has been generally noted that Americans with disabilities vote at a much lower rate than the rest of the population, but Americans living with disabilities turned out in record numbers to vote in 2008.

Make your voice heard. Know your Rights! Your right to vote is a fundamental right protected by state and federal law.

You cannot be denied the right to vote due to a disability.
You have the right to vote if you are in line before the polls close.
You have the right to choose a person to assist you, but this person cannot be your employer or an agent of your employer or union.
You have the right to be reassigned before the election to a site more accessible.

Ways in which you can vote!

Vote inside the polling place.
Curbside voting. If you can get to the voting site but cannot get into the building because of your disability, a poll worker can come to your vehicle.
Absentee ballot by mail (Click HERE for more information)
You can register and vote early at a One-Stop Absentee Site (Click HERE for more information)
You may always vote a provisional or contested ballot if you have trouble voting.

If you have trouble voting call your County Board of Elections or the NC State Board of Elections. You may also call Disability Rights NC for additional help and information.

Dates to Remember!

October 8^th --- Last Day to Register through the Mail
October 14^th – 30^th -- One Stop Early Registration and Voting
November 2^nd --- Election Day! Go VOTE!