P R O G R E S S I V E C E N T E R F O R
I N D E P E N D E N T L I V I N G, I N C.
The Forward
Fall 2003
featurearticle
What Is A MiCASSA?
MiCASSA, the Medicaid Community Attendant Services and Supports Act (S. 971 and H.R. 2032), establishes a national program of community-based attendant services and supports for people with disabilities (PwD), regardless of age or disability. This bill would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now have the choice where and how these services are provided. The two million Americans currently residing in nursing homes and other institutions would finally have a choice.
PwD, both old and young, want options to nursing homes and other institutions when they need long term services. Our long term care system is bias. Every state that receives Medicaid MUST provide nursing home services, but community-based services are optional. Seventy five percent of Medicaid long term care dollars pay for institutional services, while the remaining 25% must cover all the community-based waivers, optional programs, etc.
When support services are needed there are no real options in the community. Whether a person is born with a disability, becomes disabled through a trauma or aging they strongly want their attendant services provided in their own homes, not nursing homes or institutions. PwD and their families will no longer accept being bounded into picking institutions. It's time for Real Choice.
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Freedom to Choose
Those of you who would like to live in your own home or apartment, in your community, please raise your hand, if you can.
Nearly all of the time people with disabilities will raise their hand if they can or simply let you know another way that living in your own home is the only way to be truly free. After all when visiting someone in a nursing care facility, institution or developmental center do we hear them say welcome to my humble abode.
However too many times the opportunity to live in the community is not even an available option for persons with disabilities and people who are aging because the system does not allow the money to follow the person, it is that simple. People absolutely need this option and freedom of real choice.
People's lives are being wasted away in nursing homes and institutions. Institutional bias makes absolutely no sense at all for individuals or the system which allows for a costly unacceptable process that forces people into a warehouse environment.
The system is flawed and everyone must be a participant in some way to create change. MiCASSA, Money Following the Person and Olmstead all go together like peanut butter and jelly or would that be like USA, Freedom and Civil Liberty.
I will not live in a nursing care facility or institution, I will make that choice.
What is the State of New Hampshire'smotto as seen on their vehicle license plates?
Scott Elliott >>
Executive Director
legislative/advocacy
Dear Friend,
The Progressive Center for Independent Living, Inc. is forming a legislative/advocacy committee. The purpose of the committee will be to analyze pending legislation that affects people with disabilities, and make suggestions to the board regarding what legislative bills PCIL will support or oppose. The committee will also be responsible for informing PCIL members of both federal and state legislation, and advocating for issues that are important to the disability community such as accessibility, transportation, housing, etc.
In an effort to keep members up to date with the latest legislative information and news such as Reauthorization of the Individuals with Disabilities Education Act, the Medicaid Community Supports Act (MiCASSA), and disability news here in New Jersey, we are starting an action alert list. If you would like to be included on our action alert list and receive the latest disability policy information that may affect you, please contact PCIL.
If you would like to join our committee, our first meeting is planned for October 7, 2003 at 6:00 pm. Please call PCIL's office in Ewing, NJ at (609) 530-0006 to confirm and bring any ideas/concerns that you would like the committee to address.
If you have any questions, please feel free to contact Angela Caristo at (856) 321-0220, ext. 12 or Scott Elliott at (609) 530-0006.
Thank you.
Sincerely,
Scott Elliott, Executive Director
Angela Caristo, Bd Member/Committee Chair
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The Mercer County Monday Morning Network is part of a grassroots organization
of advocates concerned with improving the lives of people with disabilities (PwD). Monday Morning is the voice of PwD speaking out for justice, equal opportunities, improved public access, and a greater voice in community planning.
The Mercer County Monday Morning Network and PCIL received the Election Challenge Grant for 2003. The Election Challenge Grant will address the following activities: Voter Registration and Re-Registration and Polling Place Accessibility. Community Options is also working with Mercer MondayMorning Network on this grant.
If you or someone that you know needs to register or re-register to vote you can contact PCIL at (609) 530-0006 (voice), (609) 530-1234 (TTY), (609) 530-1166 (FAX). If you can register five people you will receive a free t-shirt.
"Voting is the most powerful weapon poor people have. There are a lot more poor people than rich people. So if they'd all vote, we'd win every time." Harry Belafonte, singer and political activist.
Nicole Davis >>
mindbody
Don't Quit
When thing go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
And the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit -
Rest if you must, but don't you quit.
Life is clear with it's twists and turns,
As every one of us sometimes learns,
And many a fellow turns about,
When he might have one had he stuck it out.
Don't give up though the pace seems slow -
You may succeed with another blow.
Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victors cup;
And he learned too late when the night came down,
How close he was to the golden crown.
Success is failure turned inside out -
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems afar;
So stick to the fight when you're hardest hit -
It's when things seem worst that you mustn't quit.
Unknown Author >>
______________________________
"Great spirits have always
encounter violent opposition
from mediocre minds."
Albert Einstein
thumbsupthumbsdown
thumbsup to FEMA. Trenton fire department is getting a $159,600 grant from the Federal Emergency Management Agency. The money can be used for training or equipment.
thumbsup to Americana Diner & Restaurant on Route 130 in East Windsor, New Jersey. Owner Constantie Katsifis operates an accessible business and offers great food and friendly service.
thumbsdown to NJ 101.5 dee jays Carton and Rossi for using demeaning language about people with disabilities (PwD) during its Wednesday, September 17, 2003 afternoon broadcast.
thumbsdown to some people in Lambertville for putting historic value before human value, regarding the proposed CVS drive-thru pharmacy. Besides PwD, seniors, the injured and soccer moms are not the only people using this service. Ever think that pregnant women get tired of waddling in the store. Hum.
thumbsdown to Florida State quarterback Chris Rix. Rix used an unauthorized accessible parking tag, belonging to a family friend, on campus and paid a $100 fine after fellow students told police. "I definitely made a mistake ... I definitely regret it and shouldn't have parked there. There were four handicapped spots. I thought I'd be OK for an hour." And another thumbsdown to Rix for using demeaning language. The parking spots aren't handicapped.
didyouknow ... ?
Since 1980, 50% of Americans 65 and older are working or looking for work. Why? Folks are living longer, healthier lives, women are returning to work after raising children, people see retirement savings being eaten up by stock market losses and now Social Security won't cover their needs. March, 2002, seniors working or looking for work increased to nearly 4.5 million - 13.2% of the 65 and over community of 33.8 million.
· 18% of men 65 and older in work force
· Nearly one-third of 65 and older live alone, unchanged since 1980
· Around one in ten live in poverty
· More than eight of ten homes headed by a senior are owned
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PCIL sponsered a tour of the state house on September 2, 2003. Fifteen people attended an informative tour as Pete guided the group through the well maintained and guarded building. After the tour the group returned to PCIL's Mercer office where all enjoyed a light, but filling lunch and warm conversation.
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October is breast cancer month, domestic violence awareness month, lupus awareness month and disability awareness month
PCILpicks
Is Your Community Accessible?
Somewhere in this great country there's a town or city that will win $25,000 and national recognition by entering the National Organization on Disability's 2003 Accessible America contest. Anyone who feels that his or her community is a model of accessibility - a place where people with disabilities can fully participate just like anyone else - should encourage the mayor to enter the contest before the Oct. 31, 2003, deadline.
When communities make the commitment to improve accessibility, all of their
citizens and visitors benefit. One-fifth of all Americans have some sort of disability. That's why it is crucial that communities ensure a safe and welcoming environment. The Accessible American contest puts a spotlight on those cities and towns that are leaders in improving the quality of life for people with disabilities.
As vice chairman of the National Organization on Disability (NOD), I urge mayors in towns large and small to place a priority on creating a level playing field for all citizens by providing equal access to their services and facilities. I encourage them not only to share their successes by entering the contest, but also to join NOD's Community Partnership Program on behalf of their constituents. It's a great way to learn how best to comply with the Americans with Disabilities Act and to get tips on maximizing access and opportunities.
To learn more about the contest, call (202) 293-5960 or visit the NOD web site:www.nod.org.
Christopher Reeve >>
feedback
Life as a PwD in Anchorage, Alaska and Hunterdon County, New Jersey
I was asked to compare life in Hunterdon County to life in Anchorage, Alaska as a PwD. First, I am 34 years of age and use a wheelchair and have been for 15 years. My parents divorced when I was 10 years old and my father moved to Alaska. I visited Alaska during the summer for years, then went to live with him when I was 18 to attend college. I was in a 3-car accident the evening of October 9, 1987, which I survived to thereafter use a wheelchair as my primary means of transport.
It's quite different. There are some very vocal disability groups in Alaska, and everything is completely accessible. To me this is how it happens; people are of one of two opinions; those who want everything for the disabled and those who think they've already got too much. My father's car does not have disabled plates; since I'm only a visitor there, we use a placard. Once, at the supermarket, we found an irate note reading "My son IS disabled!" stuck right on top of the placard where we had it in the rear window so that it would be visible to those in the parking lot.
It's much harder to schedule rides for the disabled in Alaska because of the greater demand for services. They have many more buses available, but the limit of bus rides are quickly reached. In Hunterdon County we have The Link, which has greatly improved its service by getting an entire fleet of wheelchair accessible buses to replace the one it had.
The Anchorage city planners are quite familiar with disability, so the whole city's laid out in a way that caters to the disabled population. We had tickets to see Cats, the theater was able to seat us in a section belonging to a subscriber who uses a
wheelchair. Every entrance is easily navigated, all the crosswalks have paved curved cut-outs, and every public bathroom has an accessible stall with transfer bars.
Of course Anchorage is not a colonial town working its way into the twenty-first century, it is a modern city newly configured to accommodate those with many varied disabilities. The slate sidewalks here in Hunterdon crack and tilt. Most offices, which need typists, are on the second floor of office buildings built before anyone had heard of elevators and ADA.
Never having been in Alaska during the winter since I became disabled, the snow would make it impossible to use the wooden ramp my father built so, I cannot report on what life is like in the winter which lasts roughly from October until April. I can tell you that Hunterdon County is 430 miles in area with a population of 125,135 and Anchorage, AK is 1,697 square miles with a population of square miles with a population of 264,937.
Also the weather is very different. Summers in Anchorage, the days last a very long time, and it does not get dark as in complete blackout. Above the Arctic Circle, the sun is up from the end of May 'til the end of July. This is the season for inhabitants of the lower 48 to visit, because during winter the sun dose not rise above the Arctic Circle from mid-November to mid- mid-February. Winter in Anchorage, the sunrise happens later and later until that magical point when the
days stop getting shorter, which is December 21, then the clocks spring forward
in April and it's a throwback to darker mornings again.
Alaska is in the Northern Hemisphere, which means Anchorage gets all the seasons we do, at roughly the same time of year. I went skinny-dipping above the Arctic Circle before my accident, so it's not frozen solid year-round. There are gas stations, fast-food places, traffic jams, road work, school buses and all the nonsense we have in Hunterdon County. Though its majesty is hardly covered in our national anthem, it is another part of our majestic United States.
Melinda L. Hall >>
PCIL volunteer and member
aboutPCIL
The Progressive Center for Independent Living (PCIL) advocates for the rights of people with disabilities to achieve and maintain independent lifestyles. Through promotion of choice, self-direction and inclusion, PCIL works with people with disabilities and their families to ensure the same freedoms and civil liberties as everyone else.
Topics/Issues:
· transportation
· education/training
· medical coverage
· home skills
· housing
· employment
· social security
· civil rights
· accessibility
· finance
· transition
· voting rights
· assistive technology/devices
· emergency preparedness
Sponsored/Hosted Programs Includes Workshops & Conferences:
· Emergency Planning That Includes People with Disabilities
· Understanding Your Health Insurance
· Cross-Disability Peer Support Group (monthly)
· Home Finance and Budgeting
· Disabilities and Addictions
· Disability Awareness & Sensitivity Training
· Social Security
· Cooking
· Deaf Awareness
· Advocacy Group (monthly)
· Deaf or Hard of Hearing/Substance Abuse Support Group,
· Americans with Disabilities Act
· Law Enforcement and PwD
Volunteer Program Activities:
· reading
· copying
· filing
· programs supports
· mailings
· database updates
· writings
· building maintenance
Emphasized Outreach Efforts:
· Urban
· Rural
· Deaf Services
intheknow
If You Have A Disability and Addiction. . . There Is Support and Assistance
Nearly one in five people with a disability also have a substance abuse problem. Dealing with substance abuse and a disability is difficult. Help IS available. First, education can make people aware of how alcohol and drug use/abuse can lead to physical disabilities as well as exacerbate existing disabilities.
People who are experiencing periods of chronic pain, depression, and isolation are some of the factors that make it more likely for people to seek escape through alcohol or drug use. Additionally, many people with disabilities have unique medical needs, and they may have easier access to prescription drugs that can inadvertently be abused in a way to deal with issues other than the medical condition for which it was prescribed.
Drug abuse is never helpful, although caretakers are often reluctant to see this or address it with loved ones dealing with a disability or chronic pain. This is called enabling. Again, education for all involved can help people recognize this dynamic and facilitate change in a positive, healthy direction.
One resource is the New Jersey Prevention Network (NJPN) member in your county. Call 1 (732) 367-0611 for the agency in your county. Another resource is the Progressive Center for Independent Living, Inc. call at (908) 782-1055. Both agencies work together to help those in need with disabilities.
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