1.)  Low vision is a vision loss that makes it difficult to accomplish visual tasks even with the best possible correction, but with the potential for use of available vision, with or without optical or non-optical compensatory visual strategies, devices and environmental modifications.

In other words, even with glasses, contacts, surgery, etc. the person does not have enough vision to do daily tasks.  But with use of some tools/skills the person may be able to complete these tasks.

2.)  People with low vision may label themselves as blind, legally blind, visually impaired, partially sighted or many other terms.

In order to be deemed legally blind by a doctor, the person’s vision when best corrected (wearing glasses, contacts, after surgery, using medication, etc.) is 20/200 or less or has a visual field of 20 degrees or less.  20/200 means that a person with 20/20 vision can see at 200 feet, that person can see at 20 feet.  A visual field of 20 degrees or less can be demonstrated by putting your hand out in front of your face in a fist and only the area blocked by the fist would be visible.

People who are blind can be spilt into two groups – light perception and no light perception.  Our society stereotypes that people who are blind only see darkness.  This is not true; many can see light, different shades of color, shadows and or shapes.

3.)  Low vision devices include everything from computer software, handheld magnifiers, video magnifiers, scanners, binoculars, monocular and many other items.

Most the time, when people think of devices that help people complete daily tasks, they think of high priced electronic equipment.  That is not always the case.  A rubber band can aid a person in detecting which can of food they are needing out of the cabinet.  A raised bump can identify which medication the person needs to take in the morning.  A piece of cardboard cut correctly can help a person with low vision fill out a check to pay bills.

Some tasks people do by using mostly their vision, people with low vision have to unlearn using their vision and rely on other senses in order to complete these tasks.  One example would be to use your hearing for the beeps while on the elevator instead of watching the number move above the elevator door to know which floor you are on.

4.)  The term low vision is very broad and encompasses many people with many different types of vision loss.  The most common causes for low vision in the United States included age-related macular degeneration, glaucoma, cataracts and diabetic retinopathy.  Most of these diseases do not affect people until they are 45 years or older but that is not always true.  There are forms of macular degeneration that affects children, infants can be born with cataracts or glaucoma, and if a person has been diagnosed with diabetes in their early years they can end up with diabetic retinopathy at an early age as well.

Please have your eyes checked annually especially if you are 45 years or older and make sure your eye doctor is checking your eyes for common diseases.

As they are working on budget issues we need to make sure they know the importance of funding the Home and Community Based services Physically Disabled waiting list and to restore the Financial Management Services(FMS) rate back to $140.

For a great write up on these issues please check out KHI’s story about the hardships facing Centers for Independent Living and the disability community in Kansas.

Shannon Jones assembled the following handouts to use in making your contacts with the Legislators.

• KACIL handout regarding funding the Waiver
• KACIL handout regarding FMS Rate

Some of the talking points for funding the waiting list are:

• As of February 1, 2012 there are 3,433 persons waiting for HCBS/PD services.
• 30 persons died while waiting during the month of Jan. 2012
• 10 persons entered a nursing facility during the month of Jan. 2012.
• The last person offered PD Services had been waiting for 3 years!
• Since 2010, 1,200 persons have come off of the PD Waiver, yet no one is coming off the waiting list.
• Approximately $33 million (State funds) would fund HCBS waiver services for those waiting.

Some of the talking points for increasing the FMS rate are:

• Last fall, Providers were notified of the $115 reduced rate with no justification and no opportunity for discussion.
• Providers are asking for a fair rate for services delivered.
• CILs anticipate additional layoffs associated with the FMS, which will amount to roughly a 25% reduction in agency staffing, the majority of which are people with disabilities.

Once you have made contact with each Legislator on the House Social Services Budget Committee, please email me any responses that you receive so we can track and amend our message as needed.

Dear Friends & Fellow Kansans:
In two days, on Wednesday, Feb 15th, we are going to the Kansas Statehouse to deliver the message that KANSANS COUNT: We Demand Democracy.

Among the many issues of concern is Voter Suppression. Many of you, along with advocacy groups, and the ACLU have expressed concern about the adverse effects of the new Kansas voter ID law. This law has the serious potential to disenfranchise a significant number of otherwise eligible voters, with a disproportionate impact on the poor, individuals with lower education levels, immigrants, the elderly, and persons with disabilities.

Voting is not a privilege, it is a right. To vote, to have YOUR VOICE, is fundamental to a democracy, and it must be protected if we are intent on maintaining our democracy.

Please review the this information provided by the ACLU which highlights the types of photo ID problems that concern them at this time.

Crystal McComas & Tamara Werth
Kansans United in Voice & Spirit

*This post is from Kansans United in Voice and Spirit

“The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadow of life, the sick, the needy, and the disabled.” – Hubert H. Humphrey

Reflect on those words for a moment. The differently abled people in the state of Kansas are NOT just sitting at home waiting for their assistance.
I want to work, but I just CAN’T! What is a state government coming to when it turns its back on a very large population of educated, but challenged individuals who can NOT function without assistance!

Hi! My name is Sharon and I am a face behind a Medicaid card. A little bit about me. I am an L3 paraplegic due to a rare autoimmune disorder very similar to Multiple Sclerosis. I have multiple chronic health issues, both physical and mental. I was able to attend college and graduate with the ultimate goal of getting off public assistance. Sadly, life is a journey with many twists and turns, so my goal to be a teacher was never realized.

I tried very hard to work and even do some volunteer work, but my multiple challenges presented too great of an obstacle to doing either one. I never intended to spend my life living on public assistance! However, you must take what hand life has dealt you and move up. Down is NOT an option!

Before I go any further, I want you stop and imagine not having working legs to just “hop” out of bed in the morning. Not having legs to carry you into the bathroom that allows you to step into the shower with little effort or getting on and off the toilet with ease! Imagine having to ask for help in completing these tasks.

I have to use my arms as my “legs” to do what a non-disabled person does with so much ease. It takes a lot of effort and skill to move from my bed to the wheelchair, the wheelchair to the toilet and to my shower bench. When it was determined that my challenges presented too great of an obstacle to any sort of work, I was thankfully given the opportunity to get onto the Home and Community Based Services(HCBS) – Physically Disabled(PD) waiver, I began working with a Center for Independent Living(CIL), which has given me the ability to live as independently as possible in this given situation.

I use Resource Center for Independent(RCIL) and have had the opportunity to meet many wonderful targeted case managers(TCMs). My current TCM has been my advocate in more than one difficult situation and provides me with answers I can’t find on my own. Proposed cuts would close these independent living centers and the loss of these TCMs. It terrifies me that if I lost my CIL and TCM, I would lose the ability to live with my parents and maintain the level of independence that as a TEAM my TCM and I have worked very hard to achieve!

The thought of this termination is burdening me with much unwanted stress. I already have multiple stresses in my daily life; it creates unwanted stresses that I don’t need to add to! The idea of so-called “managed care” means to a move away from consumer directed care to a committee of outsiders directed care. How can they possibly know all complexities of my multiple challenges? This group only would know me by a so-called case file and a number.

Meeting one face to face is the ONLY option in providing the best decisions for maintenance of my current level of independence! What would happen to me if I lost the ability to have a personal care attendant come into my home 5 days a week to provide me with activities of daily living assistance and various housekeeping tasks? I know what would happen – I would be TOTALLY DEPENDENT upon my family to provide me with the help that I need to do everything from toileting to doing my laundry!

There are far reaching ramifications of me being totally dependent on family for assistance could range from them having to leave their jobs to take care of my needs and that would impact the state economy because there would higher number of unemployed people providing the care for the disabled loved ones.

Think about that – less people bringing home income would equate a HUGE HIT to the various revenues available to the state of Kansas. It might even result in me being FORCED to move out of the house I share with my parents. Being sent to live in a long-term care facility is only just a politically correct term for a human warehouse.

Decisions are made there that are NOT in the best interest of the person because it is a group of outsiders making those decisions. The loss of both RCIL and my TCM would mean a loss of the level of independence that we and I have worked TOGETHER very hard to achieve. One thing is not more important than another…there has to be balance. My TCM is a very valuable asset to me retaining my current level of independence.

Consumer and TCM directed care is a far better option in my opinion than what has been deemed “managed care”. It is essentially a committee that makes the decision that they deem best for the individual. The consumer and TCM know far better what is in my best interest and a MCO (managed care organization) would not have the opportunity to see the face behind the number.

Without knowing the person, you can’t make an informed decision. Knowledge is power. Ignorance is NOT bliss! I hope that by me sharing my story it helps you to make a much better and informed decision on the far reaching ramifications of such proposed cuts.

Take a minute to think about the far reaching ramifications of these changes. It would not only put the multitude of Kansas residents on the various HCBS waivers who would be losing out on living as independent life as much as their different challenges allow, but it would create a huge gap in invaluable services that these CIL’s provide.

They provide a lot more than just a TCM. These services range from providing a voice to those who are differently abled to being an invaluable resource for everything from locating adaptive equipment to being a source of belonging. Belonging to me means having a sense of self and pride in what I am able to accomplish every day. It is also a sense of community that makes me feel less isolated from my peers.

One final thought is a quote from a late and great president, Ronald Regan.  He was quoted as saying “concentrated power has always been the enemy of liberty”. Thank you for letting me share my journey!

If you have not had many interactions with persons with disabilities, you may not know exactly how to act. For example, you may ask yourself “how do I talk to someone in a wheelchair?” or “how do I interact with someone who is blind or deaf?” These questions often come to our minds whether we have a disability or not.

The United Spinal Association put together a Disability Etiquette booklet for all of us to learn and to have a better understanding about interacting with people with disabilities.

This booklet provides the basics, tips on specific disabilities, service animals, and much more. To give you an idea of what you can learn from the booklet, below is the portion about the basics of disability etiquette.

ASK BEFORE YOU HELP

Just because someone has a disability, don’t assume he/she needs help. If the setting is accessible, people with disabilities can usually get around fine. Adults with disabilities want to be treated as independent people. Offer assistance only if the person appears to need it. And if he/she does want help, ask how before you act.

BE SENSITIVE ABOUT PHYSICAL CONTACT

Some people with disabilities depend on their arms for balance. Grabbing them-even if your intention is to assist-could knock them off balance. Avoid patting a person on the head or touching his/her wheelchair, scooter or cane. People with disabilities consider their equipment part of their personal space.

THINK BEFORE YOU SPEAK

Always speak directly to the person with a disability, not to this companion, aide or sign language interpreter. Making small talk with a person who has a disability is great; just talk to him/her as you would with anyone else. Respect his/her privacy. If you ask about his/her disability, he/she may feel like you are treating him/her as a disability, not as a human being. However, many people with disabilities are comfortable with children’s natural curiosity and do not mind if a child asks them questions.

When communicating to people with disabilities or about people with disabilities, keep in mind what words and phrases you are using. Below are some guidelines that will help you understand.

Disability vs. Handicap

• A disability is a condition caused by such things as an accident or trauma, disease, or genetics that limits a person’s vision, hearing, speech, mobility, or mental function.
• A handicap is a constraint imposed upon a person, regardless of that person’s ability or disability. These constraints can be physical or attitudinal. For example, stairs and curbs are handicaps imposed on those who use wheelchairs.

Always remember that the person is not the condition. Keep all your speech person focused, not disability focused. Avoid terms which carry a negative connotation such as abnormal, afflicted, confined, crippled, defective, handicap, invalid, lame, palsied, retarded, stricken, sufferer, victim, and withered. Instead use empowering individualized vocabulary. Also, don’t clump them with phrases like “the blind” or “the disabled.”

DON’T MAKE ASSUMPTIONS

People with disabilities are the best judge of what they can or cannot do. Don’t make decisions for them about participating in any activity. Depending on the situation, it could be a violation of The Americans With Disabilities Act (ADA) to exclude people because of a presumption about their limitations.

RESPOND GRACIOUSLY TO REQUESTS

When people who have a disability ask for an accommodation at your business, it is not a compliant. It shows they feel comfortable enough in your establishment to ask for what they need. And if they get a positive response, they will probably come back again and tell their friends about the good service they received.

The key thing to remember is if you are ever unsure what to do or say with a person who has a disability just ask them. They are willing to help you to understand and learn. You can learn more about disability etiquette such as specific disabilities by going to www.unitedspinal.org and click on disability etiquette booklet. Or you can go to your local RCIL office to view a hard copy of the booklet in their resource library.

Before I close, I would like to include a final word from disability etiquette booklet that is important to know. It says,

“People with disabilities are individuals with families, jobs, hobbies, likes and dislikes, and problems and joys. While the disability is an integral part of who they are, it alone does not define them. Don’t make them into disability heroes or victims. Treat them as individuals.”

DON’T BE FOOLED – YOU SHOULDN’T HAVE TO PAY A DIME TO VOTE!

Starting this year, Kansas voters need to have photo ID in order to vote. The list of accepted IDs includes: driver’s licenses, state ID cards, concealed carry handgun licenses, U.S. passports, employee IDs, military IDs, Kansas postsecondary student IDs, and welfare ID cards. If you or someone you know is struggling to get an accepted form of photo ID, please call us at 816-994-3315, especially if:

• You were born in a state other than Kansas, lack all of the above IDs, and do not have a certified copy of your birth certificate. If so, you’ll have to spend money to vote and that’s unfair and unconstitutional.
• You lack all of the above IDs and are being forced to spend money on a marriage certificate or other document in order to obtain a Kansas ID card.
• You lack all of the above IDs, but have a tribal ID.

It is important that Governor Brownback hears from the disability community and our supporters and understands that their lack of a concrete plan to address the waiting lists is not acceptable. According to SRS, as of January 1, 2012 there are 3,369 persons waiting for Home and Community Based Services (HCBS) Physically Disabled (PD) services. 15 persons died while waiting during the month of Dec, 2011. The last person offered PD Services had been waiting for 2 years and 9 months!

These are Kansans age 16-64 who could, at any time, receive care in a nursing home at a much higher cost to the state. Meanwhile, the state’s ending balance continues to rise. Please contact Governor Brownback today and ask him what his plan is to ensure that the lives of Kansans are given the respect and dignity they deserve. Click here for a sample letter.

While the administration and SRS officials remain inactive on this matter, our brothers and sisters continue to suffer and die without services. From today until Feb. 10th we are part of a statewide effort to contact the Governor’s office and the SRS office and ask them a simple question; ‘What’s the Governor’s office going to do about the ever expanding waiting list for home and community based services for the physically disabled?’ or “What is SRS’ plan to reduce the HCBS/PD waiting lists?’

Please join us in calling or emailing EVERY SINGLE DAY and asking this vital question. The contact information is as follows:

Contact for Governor: governor@ks.gov or toll free: 877-579-6757 or 785-296-3232

Contact for SRS: Jeff.Kahrs@srs.ks.gov or 785-296-3271

If you get feedback please post it in our comments section.

LIEAP is a federally funded program that helps eligible households pay a portion of their home energy costs by providing a one-time per year benefit.  You will receive a paper application in the mail if you are a 2011 LIEAP applicants and December recipients of food, cash, or medical assistance.  LIEAP applications can be submitted online or by mail starting January 18th through March 30th.

The following summary describes basic LIEAP eligibility provisions.  If you need additional information you can contact SRS at 1-800-432-0043.

In order to qualify, applicants must meet the following requirements:

1. An adult living at the address must be personally responsible for paying for heating costs incurred at the current residence, payable either to the landlord or to the fuel vendor.
2. Applicants must demonstrate a recent history of payments toward purchase of the primary heating energy.
3. The combined gross income (before deductions) of all persons living at the address may not exceed 130% of the federal poverty level according to the guidelines listed below:

Last night Governor Sam Brownback delivered his 2012 State of the State address. It was a rather brief speech but stuffed with huge plans to move our state further down his Road Map for Kansas.

As expected, a great deal of emphasis was placed on drastic changes to the Kansas tax code. He would see the individual income tax brackets reduced to 2 from 3 and the top tax rate would be 4.9% instead of the current 6.45% while the bottom rate would drop to 3% from the current 3.5% bottom tier rate.

Along with the income tax cuts he added in some very tough cuts to tax breaks including itemized deductions and the very contentious elimination of the earned income credit and child and dependent care breaks that are hugely beneficial to the State’s lowest earners.

In fact, in the last Legislative session advocates for Kansas families were fighting a bill that would phase out the earned income credit. At that time it was estimated that 6,500 Kansas families would be pushed below the poverty guideline if the earned income credit was ended.

Like a cherry on the top of his tax overhaul, the Governor would like to see the Legislature  limit further growth in government expenditures to no more than 2% a year with any additional revenue used to lower the State income tax.

The danger in a system like this is that most programs and services in Kansas are currently running at greatly decreased budgets, if this is adopted, funding levels for these would essentially be frozen at levels that are not sustainable. In addition, limiting all government expenditures to no more than 2% would further hobble systems like education, Medicaid, social services, and KPERS all three of which require more funding each year than 2% would allow.

There was not much said regarding the Medicaid makeover; much of the details of that plan are awaiting the responses to the RFP as the state has left the determination of many elements of the plan to the Managed Care organizations they are going to be contracting with. Governor Brownback did stress that Kansans with disabilities would be given a better chance at finding meaningful employment and a bridge away from Medicaid. We have heard that an announcement regarding several employment initiative is coming in a few weeks.

All in all, the State of the State was pretty much what was expected, the Governor’s budget is slated to be released this morning and once we have more information on that we will make it available to you. You can read or download a copy of the 2012 State of the State address on the Governor’s website.