Britain’s Missing Top Model

I enjoy watching the cable television channel BBC America and have seen the commercials advertising a show called "Britain's Missing Top Model" but had never taken the time to watch it until last night. I have to admit, I thought the show was pretty good.

The BBC America website describes the show as:
"Eight beautiful disabled models, seven tough assignments, and one incredible prize; is the modeling world ready for them? Eight young women compete to break down barriers and overcome prejudices in the exclusive modeling industry. One will win her dream of a photo shoot in Marie Claire magazine. The women will participate in challenges that range from modeling for popular British retailers to mastering the catwalk. Britain’s Missing Top Model sets out to challenge the fashion industry's boundaries and redefine society's concept of the ideal woman."

I have had the opportunity to walk on both sides of the fence as far as experiencing life without and now with a disability. I spent the first 19 years of my life as an "able-bodied person", I doubt that term is deemed "politically correct" today so if you feel the need, write a comment and complain :-), I promise to post it. For the past 31 years of my life I have used a wheelchair, so I feel like I have some experience either way.

I plan on continuing to watch the show until the season ends and I will post my views after each episode. Please check it out and send in your comments. Let me know what you think of the show and how it relates to the perception of people with disabilities.

This evening's show had the women interacting with male models who did not have a disability. They had to do an "intimacy" exercise at the start of the episode, that split them into couples, then the couple had to look at each other and gradually end up touching and embracing.

The next task for the women was to do an audition for a short TV commercial, again, with a male model without a disability. The woman had to "act" as if the man was her "lover" and portray that the ice cream she was eating was so good that she wouldn't even share it with someone she loves. It was very interesting to watch the woman who is deaf try to convince the casting person that they should allow her to use signing in the commercial. It ended up that they allowed her to do two different auditions, one with signing and the other with her talking. Her ability to show emotion and expression was incredible when she used signing!

The final task was an intimate photo shoot with a male model. The woman who is a paraplegic ended up with the best scores from the judges, and she was beautiful, BUT, I was disappointed that they had her on a sofa and not in her chair.

Unfortunately, the woman who is deaf ended up being eliminated from the show this week. I am looking forward to next weeks episode.

The show comes on Tuesday evenings. To see the air times in your area, visit BBC America's website.

I look forward to your comments on this subject.

Thanks for reading!

Sharon

Guidelines for Attendant Training

Guidelines for Attendant Training

You will need to teach your newly hired PCA what you need done in terms of your personal

care, and how he or she can best meet your needs. It is helpful to utilize your self- care checklist when training your PCA. The checklist ensures that you have covered all aspects of your care, breaks down each task into manageable steps, and can be used as a written resource for your caregiver in the future. In order to help your personal care assistant better understand your needs, have a frank discussion about your disability and how it relates to what you can and cannot do for yourself. Encourage your PCA to ask questions throughout the training process and clarify any medical or technical terms as you go along.

Each personal care task (for example - bathing) should be broken down into smaller, manageable steps. Give the PCA instruction on each step and explain why it is important to you that each step be done the way you request. Remember that repetition is the key to learning, therefore, it may take your PCA several attempts before he or she performs the task exactly the way you would like. Encourage your PCA to give you feedback and ask questions. Give positive feedback when your caregiver gets the task right and use humor whenever possible.

Your Relationship with Your PCA

Providing a positive work environment is a key factor in keeping your personal care assistant. Good communication is the key to maintaining any relationship - and your relationship with your caregiver is no exception. It is important to keep communication pathways open. If you sense any problems or misunderstandings with your caregiver, get them out in the open by confronting the issue and discussing it as quickly as possible.

In order to facilitate a positive relationship, you must treat your PCA with respect, and be as flexible as possible. Keep in mind that he or she has responsibilities and commitments outside of providing your personal care. Respect his or her privacy and base your relationship on honesty, mutual respect and open communication.

Giving (and receiving) feedback is an important aspect of the relationship between caregiver and employer. When it becomes necessary to give critical feedback, make it as positive and constructive as possible. Although it can be difficult, give the feedback immediately after your PCA performs the task or exhibits the behavior you are criticizing. Give feedback on only one incident at a time, and provide feedback on the person's actions, not the person. Make sure you use the opportunity to help your PCA do the job more effectively rather than launching a personal attack. After giving critical feedback, be sure to clarify how you would like the task performed or the situation handled in the future.

Your style of communication can also be an important factor in maintaining a comfortable working relationship with your caregiver. Utilizing an assertive rather than an aggressive style will foster open communication. An assertive person is open to feedback from others, is direct and gives clear messages. The assertive individual is also honest with him or herself and also with others. Aggressive behavior does not show consideration for the feelings of others and tends to shut down the lines of communication.

Your lifestyle may differ from that of your personal care assistant. You may have differences of opinion over something as minor as which television programs or music you prefer, or over major issues such as smoking, drug and/or alcohol use. Consider your tolerance level for such behavior and make your stand clear. If you do not want someone to smoke in your home, for example, ask your PCA to smoke outside. Do not allow drinking or drug use to interfere with your PCA's ability to meet your needs and perform the job.

In order to provide an optimal working environment for your PCA and foster a positive relationship, there are several things to keep in mind when you interact with your caregiver. You do need to establish your position as employer as soon as possible to ensure that your needs will be met in the manner that you would like. However, keep in mind that the job of providing personal care is not easy, and try not to be too demanding. It is important to be kind and courteous when you ask for assistance. When communicating your needs try putting yourself in your caregiver's place, and think about how you would want someone to talk to you. It is upsetting to be taken for granted, so try to show your appreciation by thanking your PCA.

Being organized will benefit yourself as well as your attendant. Make a list of the tasks you need to have done each day of the week. This makes the best use of the time you have with your caregiver and forces you to anticipate your future needs in terms of daily activities and errands. Think about things like grocery and errand needs - which day you plan on shopping and when. Do you need assistance with your laundry and when does it need to be done? Are you able to do your bowel program in the evening so as to lighten up the morning activities? When you organize your needs and prepare for the week, you communicate respect for your PCA's time, and both of you are likely to get more done with the time you have together.

Unfortunately, it is possible that the person you selected to be your caregiver may not actually be a good match for you or is unable to meet your needs for whatever reason. If this is the case, it is always preferable to part ways on the best possible terms, as you may want to use your PCA as a back-up caregiver in the future (if the circumstances allow). Make sure your PCA returns your housekey and any other personal effects. Get a forwarding address and phone number if possible, in case you need to contact him or her in the future.

Whether your caregiver is terminated or leaves for his or her own reasons, you will once again need to start the process of finding someone to provide your care. It is preferable to start this process while your PCA is still with you. However, this is not always possible, as many times, the caregiver leaves with little or no notice. This is why it is important to have back-up care in place. Hopefully, the knowledge gained through the experience of hiring and managing your first PCA will make the process of finding a replacement caregiver easier.

YOU ARE NOT ALONE: TBI Survivors Network

KXLY TV will be running a PSA during the week of December 21st highlighting the experiences of individuals with Traumatic Brain Injuries (TBI). 1.4 million people sustain a traumatic brain injury each year. Lives are changed in a blink of an eye. (For a group near you call 800-758-1123)

BUS SERVICE MAY EXTEND TO SILVERWOOD

On December 8, 2009, Michelle Porter (Americorps employee), and Virgil Edwards (DAC staff), held a meeting to discuss the possibility of extending bus service to Silverwood Theme Park. The people in attendance included John Austin from Panhandle Area Council; Bob Spaulding and Aron Eirls from Citylink; and Helen Stephens from N.I.C.E transportation. Representatives from Silverwood were also at the table and included Joanne Morier, John Jacmim and Nancy Giammarco.

After much discussion, it was decided that this new bus route could be a viable option and it was agreed that this could happen as long as it would be cost effective to do so.

The next meeting will be held on Wednesday, January 20, 2010 at the DAC office. The same group of individuals will be working on this project with hopes of being in effect by this summer. We will keep everyone posted.

Contributed by the CDA DAC team.

DAC-NW December News

HAPPY HOLIDAYS!!

The entire staff from all three DAC offices in Lewiston, Moscow, and Coeur d’Alene, wishes you a safe and happy holiday season. We hope that 2010 brings you joy and happiness throughout the entire year!

DAC BECOMES A MEMBER OF THE GREATER SANDPOINT CHAMBER OF COMMERCE

We are excited about our new membership with the Chamber in Sandpoint and the opportunity to attend the first luncheon of 2010 on January 14th. We will be using our NEW display board to educate the other Chamber members about the services DAC has to offer. Our membership includes a free web ad for one month and a free full-page ad in their newsletter.

Contributed by the CDA DAC team.

NCIL: Celebrating 25 Years of Independent Living

NCIL is the oldest cross-disability, national grassroots organization run by and for people with disabilities. NCIL's membership includes people with disabilities, Centers for Independent Living, Statewide Independent living Councils, and other disability rights organizations. As a membership organization, NCIL advances Independent Living and the rights of people with disabilities through consumer-driven advocacy.

1) What’s Happening in the Nation’s Capital?

The CLASS Act Survives Attempted Death-Blow, Remains in Senate Reform Bill

On Friday, December 4th, after two sessions of debate in as many days, the U.S. Senate took two votes on amendments regarding the CLASS Act as part of healthcare reform.

The first vote was offered by Senator Whitehouse (D-RI). It was a “Sense of the Senate” that premiums paid into the CLASS program would be used solely for their intended purpose, not as part of the general federal budget. This amendment passed 98-0. While NCIL supported this amendment, a Sense of the Senate holds no enforcement procedure, but merely expresses the thoughts of the Senate.

The second amendment, offered by Senator Thune (R-SD), was to strip the CLASS Act entirely from the Senate bill. NCIL has been warning our members about the imminent need to kill this amendment. Debate on the amendment was ceased, a vote held, and the measure failed. Amendments on this bill require 60 votes to pass, and the amendment to kill the CLASS Act failed by 13 votes. Seven Democratic senators, who generally support reform, did not support the CLASS program. They were:

-Mark Udall of Colorado

-Even Bayh of Indiana

-Kent Conrad of North Dakota

-Mary Landrieu of Louisiana

-Blanche Lincoln of Arkansas

-Claire McCaskill of Missouri

-Mark Warner and Jim Webb of Virginia, and

-Ben Nelson of Nebraska.

View the Roll Call vote to see how your senator voted - click here! Please call your senators to thank them if they supported the CLASS program by voting NO to the Thune amendment. You can find the phone number you need by clicking here.

If your Senator(s) voted to strip the CLASS program from the healthcare reform bill, let them know your dissatisfaction. There could be another amendment or deal brokered that could strip the CLASS Act from the bill. Related Story - click here.

2) National News

A Proclamation by the President on the International Day of Persons with Disabilities 2009

Source: The White House- This year, in an effort to renew our global commitment to human rights and fundamental freedoms for persons with disabilities, the United States became a proud signatory of the United Nations Convention on the Rights of Persons with Disabilities. This treaty represents a paradigm shift, urging equal protection and benefits for all citizens, and reaffirming the inherent dignity and independence of the 650 million people living with disabilities worldwide.

Today, as we commemorate the International Day of Persons with Disabilities, we celebrate the skills, achievements, and contributions of persons with disabilities in America and around the world. We recognize the progress we have made toward equality for all, and we rededicate ourselves to ensuring individuals with disabilities can reach their greatest potential.

Despite our increased efforts, persons with disabilities continue to face barriers to their full participation in society. In the United States, Americans with disabilities still experience discrimination in the workplace and in their communities. In developing nations, 90 percent of children with disabilities do not attend school, and women and girls with disabilities are all too often subjected to deep discrimination.

If we are to move forward as a people, both at home and abroad, all individuals must be fully integrated into our human family. The International Day of Persons with Disabilities is a time to renew our commitment to the principles of empowerment, dignity, and equality. The United States has co-sponsored and joined consensus on the United Nations General Assembly Third Committee's resolution titled, "Realizing the Millennium Development Goals for Persons with Disabilities." We must continue to embrace diversity and reject discrimination in all its forms, and insist on equality of opportunity and accessibility for all. Let our efforts remind us that when we work together, we can build a world free of unnecessary barriers and include every member of our international community.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim December 3, 2009, as International Day of Persons with Disabilities. I call on all Americans to observe this day with appropriate ceremonies, activities, and programs.

IN WITNESS WHEREOF, I have hereunto set my hand this second day of December, in the year of our Lord two thousand nine, and of the Independence of the United States of America the two hundred and thirty-fourth.

(All information provided via the Weekly Advocacy Monitor, ncil.org )

A Guide To Hiring a Personal Care Assistant

Personal Assistance Services (PAS) include a variety of activities which are determined by the individual needs of the person with the disability.

Finding assistance, while not compromising independence and dignity, can be challenging. There are many issues to consider when planning for personal care needs to be met. Personal assistance services can range from assistance with grocery shopping and meal preparation to bathing, bowel and bladder care. The Personal Care Assistant (PCA) is the person who assists the individual with his or her daily living activities.

Options for Personal Assistance Services-

One of the first questions that is raised when considering who should provide personal assistance

services is whether or not a family member should take on the role of personal care assistant.

There are several factors to consider when making this decision. Oftentimes, the decision is

made based on financial considerations, without taking into account other options or thinking
about the potential toll that providing care may take on the personal relationship.

When a family member, whether it be a parent, spouse, son or daughter assumes the role of

personal care assistant, the lines between multiple roles can become blurred. Providing personal
care can put stress on any relationship, and can be particularly hard on a marriage.

Hiring a personal care assistant, someone who is, in fact, employed by you, may be the option that affords you the maximum amount of control and input into your care. The most important part of the job is to take direction and provide care in a manner that is suitable to his or her employer.

There are a couple of options for finding a hired personal care assistant, one of which is utilizing a home health agency. One of the primary benefits of hiring a PCA through an agency is convenience, as the agency presumably handles the screening and application process. Also, an agency will often provide back-up care in the event that the PCA is sick or doesn't show up for work unexpectedly. The disadvantages of hiring a PCA through an agency include higher cost in most cases, as well as a lack of control over choosing your caregiver. You will also most likely have to provide your PCA with specific training as to your needs.

Regardless of who takes on the role of personal care assistant, it is imperative to have a back-up plan in place in the event that the PCA gets sick, quits without notice or is unable to provide care for any reason. Being without a personal care assistant can be a frightening and intimidating experience that is best avoided. A well thought out plan that has been prepared before such an occasion occurs is the best way to handle the situation.

You should develop a list of people who are willing to be utilized as a back-up attendant, which could include family members, and friends. Find out the time of day and day of the week each person on the list could be available to assist you.

Prior to attempting to find a PCA, full consideration should be given to your specific needs, such as what times of the day care is needed the most, which types of caregiving activities are required, and how these could be consolidated into blocks of time.

One of the most common ways to find an attendant is through an advertisement in the

newspaper. In a larger city, it may be advisable to advertise in the local area newspaper. The first step is to create an ad that briefly states your needs and what type of person is being sought, while hopefully sparking the interest of a prospective attendant.

Another suggestion for finding an attendant is to contact the local Independent Living Center. Attendant care is one of the key services independent living centers are funded to provide. Most independent living centers keep a listing of potential attendants, that may or may not have been preliminarily screened by the staff, and some even offer classes to train the person with the disability, who may need assistance with the hiring and management process, or the prospective attendant.

Other avenues to pursue in the search for a PCA include posting an ad on a bulletin board at the local community college or university's career placement center. It may be helpful to focus on those schools that offer specific curriculum for nursing or occupational/physical/ recreational therapy. Oftentimes the students in such programs need experience in the field in order to graduate.

There are other locations that may offer places to post a job listing that may attract prospective

PCA's as well. Hospital bulletin boards may be a good source, as staff members may be looking
for extra work. Advertising in a local church bulletin, at vocational rehabilitation agencies, or at
local unemployment or social service agencies may also be worth trying. Finally, never underestimate the power of word of mouth. Get the word out by telling as many friends, family members, organizational associates and neighbors that you are looking for a PCA. A prospective attendant that has been referred by someone you know and trust may be your best bet. Also, talk to other individuals who have attendant care needs in your community to find out who they are using. Oftentimes one attendant will work for two or more people.

Screening and Interviewing A Prospective Personal Care Assistant-

In preparation for the screening and interview process, the individual with the disability should conduct a personal needs assessment to clarify those activities for which an attendant's assistance is needed. It is helpful to develop a checklist that encompasses all of the self-care, housekeeping, grocery shopping, errand running and transportation activities for which you need assistance. This checklist can be utilized in the screening and interview process. It is also helpful to clearly outline your expectations for how each task for which you require assistance will be completed.

This checklist will be a useful tool for training your PCA, and may help to address any differences in opinion regarding how a specific task should be done.

Before beginning the search for a personal care assistant, there are several things to consider

- your preference for a male or female caregiver, and whether you would like the caregiver to
live-in or just come in for several hours at a time to provide assistance. This, of course, also depends on the level of care that you require, as well as space limitations in your home and your
need/desire for privacy. If space and your personal lifestyle permits, you may consider offering a
personal care assistant room and board in exchange for personal assistant services.

It may be helpful to make a list of characteristics you would like in a caregiver. Give careful

consideration to factors such as honesty, reliability, consideration, promptness, ability to listen, willingness to learn new or different tasks, and how important each of these characteristics are to you in your PCA. What are the most important, and least important, and what are you willing to compromise on? Think about whether or not you want an attendant with shared interests, and how important issues such as having reliable transportation, smoking, drug and alcohol use, and previous driving record are to you.

It is advisable to screen a prospective attendant before expending the time and energy on

conducting a full interview on a person that may not be well suited to meet your needs. A brief
phone interview can be a helpful tool for screening individuals who may be interested in the job.
The telephone interview can provide the opportunity to find out whether or not the potential candidate has the characteristics you are looking for in a PCA, as well as chance for him or her to learn more about the job (such as the schedule, salary, and other requirements).

The Interview-

Consider conducting the interview at a location other than your home for safety reasons. If possible, have a friend or relative present or nearby during the interview.

The interview should be seen as an opportunity to get to know the prospective PCA. Discuss previous work experience, including length of employment for each position he or she has held. This is an important issue to bring up - you don't want to spend the time training a PCA to have him or her quit after a short time if you can avoid it. Inquire as to the type of work the applicant has enjoyed most and liked the least, and whether or not they have experience and are comfortable around a person with a disability.

The applicant's transportation resources should also be discussed. If driving is a requirement for

the position, talk about the applicant's driving record, and find out if he or she would be comfortable driving your vehicle should that be necessary.

The interview process is also the time to discuss your needs and exactly what the job entails

in detail. It is especially important to talk about any physical requirements of the job such as
lifting, transferring, bathing, etc. After you have described your needs and the job requirements,
ask the applicant whether or not there are any tasks he or she would not feel comfortable performing.

Also discuss compensation - whether pay will be hourly or a combination of a stipend with room and board. Let the applicant know the days and hours you need assistance and clarify which

days he/she will have off. Ask the applicant why he or she is interested in the job.

Finally, finish the interview process by giving the applicant the opportunity to ask you questions about the job requirements or your lifestyle. Discuss your timeline for making a decision and assure him or her that you will get in touch with your choice whether or not they are selected for the position.

The next step in the interview process is to contact the applicant's references. It is imperative before hiring anyone to check their references. It can sometimes be difficult to get information from previous employers for fear of a lawsuit, but explain your situation clearly, and if a reference refuses to give you information about an applicant, move onto the next reference, or ask the applicant for additional references. The feedback you receive from a

previous employer may be the deciding factor in whether or not you hire someone. During a reference check, try to obtain information on the applicant's length of employment, type of tasks performed in the course of the job, reliability, promptness, response to feedback and supervision,
ability to learn new tasks, and why the applicant left the previous job. Finally, ask the former employer whether or not the applicant would be considered for future employment.

Making A Decision-

After you have completed the interview process and obtained information from all of the applicant's references, it is time to make a decision as to who to hire for your personal care. The

primary consideration when making a final selection should be your gut reaction to a potential applicant. Regardless of qualifications, if for any reason, you do not feel completely comfortable with an applicant, do not consider him or her for the position.

Wounded Warrior Project

The Wounded Warrior Project began when several individuals took small, inspired actions to help others in need.

The objective was to provide tangible support for the severely wounded and help them on the road to healing, both physically and mentally. What had been initially viewed as a small contribution (compared with what the warriors had sacrificed while serving our country) has become WWP's signature program:"WWP backpacks delivered bedside to wounded warriors."

The mission of the Wounded Warrior Project is to honor and empower wounded warriors.

Wounded Warrior Project is a nonprofit organization.

Programs and Services are organized under our ASSURE Model of Service thus ensuring no warrior is forgotten and that this is the most successful generation of veterans in our nation’s history. For more information on our programs and services, click on any of the links below.

Advocate (Advocacy, Sacrifice Center)
Serve (WWP Packs, Alumni)
Support (Coping and Family Services)
Unite (Soldier Ride, Operation Outreach)
Rehabilitate (WWDSP)
Educate (Transition Training Academy, TRACK)
Employ (Warriors to Work)
Empower (WWDSP)

To read more about the Wounded Warrior Project, click here: visit the WWP website.

Disability Humour

Visit www.dizabled.com for more great cartoons and disability related information!

(Click the cartoon image for a larger view)

Sins Invalid- An unashamed look at sex, beauty and disability

Here is an interesting article by David Steinberg, a journalist and photographer.

"Who is sexy? Who is sexual? Who is sexually desirable? Who is sexually vibrant?

Are the people that society designates "beautiful" really sexier or more sexual than the people who get labeled "plain"?

What about older people, heavier people? What about people with disabilities? Are these people fully sexual human beings even though they don't show up in movies, on tv, or in advertising? What happens to all of us when we write off huge sections of the population as non-sexual or sexually undesirable?

David Steinberg website

These are some of the questions addressed in Sins Invalid: An Unashamed Claim to Beauty in the Face of Invisibility, whose fourth annual multi-media presentation is being performed this coming weekend at the Brava Theater." For more information on this subject and the performance dates click here!

Work Incentives Planning and Assistance program

Work Incentives Planning and Assistance program

Social Security has a Work Incentives Planning and Assistance program (WIPA) that will help answer questions about Social Security’s work incentives and help you make a decision about working.

Community-based organizations provide information and work incentives planning and assistance to people who are receiving Social Security or SSI disability benefits and who are working or considering work. Their community work incentive coordinators can help you understand how work affects your payments and explain what other federal, state and local supports there are for people with disabilities who want to work.

To locate the WIPA project nearest you, please call 1-866-968-7842 (TTY 1-866-833-2967).

Work Incentives Planning and Assistance program Service Providers Listed sate by state- Click Here!

Social Security work incentives

Trial work period—The trial work period allows you to test your ability to work for at least nine months. During your trial work period, you will receive your full Social Security benefits regardless of how much you are earning as long as you report your work activity and you continue to have a disabling impairment. In 2009, a trial work month is any month in which your total earnings are $700 or more, or, if you are self-employed, you earn more than $700 (after expenses) or spend more than 80 hours in your own business. The trial work period continues until you have worked nine months within a 60-month period.

Extended period of eligibility—After your trial work period, you have 36 months during which you can work and still receive benefits for any month your earnings are not “substantial.” In 2009, earnings of $980 or more ($1,640 if you are blind) are considered substantial. No new application or disability decision is needed for you to receive a Social Security disability benefit during this period.

Expedited reinstatement—After your benefits stop because your earnings are substantial, you have five years during which you may ask us to start your benefits immediately if you find yourself unable to continue working because of your condition. You will not have to file a new disability application and you will not have to wait for your benefits to start while your medical condition is being reviewed to make sure you are still disabled.

Continuation of Medicare—If your Social Security disability ­benefits stop because of your earnings, but you are still disabled, your free Medicare Part A coverage will ­continue for at least 93 months after the nine-month trial work period. After that, you can buy Medicare Part A coverage by ­paying a monthly premium. If you have Medicare Part B coverage, you must continue to pay the premium. If you want to end your Part B coverage, you must request it in writing.

Work expenses related to your disability—If you work, you may have to pay for certain items and services that people without ­disabilities do not pay for. For example, because of your medical condition, you may need to take a taxi to work instead of public transportation. We may be able to deduct the cost of the taxi from your monthly earnings before we determine if you are still eligible for benefits.

*For more information about returning to work while receiving SSDI benefits, visit www.ssa.gov

Guidelines for working while receiving SSDI

Getting disability benefits? We can help you get to work!

If you are getting disability benefits, we have good news for you. Social Security’s work incentives and Ticket to Work programs can help you if you are interested in working.

Special rules make it possible for people receiving Social Security disability benefits or Supplemental Security Income (SSI) to work and still receive monthly payments.

And, if you cannot continue working because of your medical condition, your benefits can start again—you may not have to file a new application.

Work incentives include:

• Continued cash benefits for a time while you work;
• Continued Medicare or Medicaid while you work; and
• Help with education, training and rehabilitation to start
  a new line of work.

The rules are different under Social Security and SSI. We describe the rules under each program in different sections of this booklet.

But, whether you are receiving Social Security or SSI, it is important to let us know promptly when you start or stop working, or if any other change occurs that could affect your benefits.

The Ticket to Work program may also help you if you would like to work. You can receive vocational rehabilitation, training, job referrals and other employment support services free of charge. You will not undergo medical reviews while you are using the ticket and making timely progress pursuing your return to work plan.

You can get more information on the Ticket to Work program by calling 1-866-968-7842 toll-free (TTY 1-866-833-2967). Or you can call our toll-free number and ask for Your Ticket To Work (Publication No. 05-10061).

You also can visit the Ticket to Work website at www.socialsecurity.gov/work for more information.

* this is useful information provided by the Social Security Administration (SSA)

The "Endless Search"

People magazine covered this interesting story about a brother who has been on a never-ending search for his sister who was institutionalized 43 years ago.

I feel like this article sheds light on how far we have come in society when dealing with Independent Living and people with disabilities, but, it also reminds me of how important it is to continue the task of pushing the Independent Living movement harder and faster!






"From People magazine:

(Newstands only; article not available on the magazine’s website.)

Families across the country are searching for loved ones with disabilities who were sent away to institutions years ago, often without warning or explanation.

Kevin Hopkins, 53, of Springfield, Virginia, is seeking his stepsister Janet, who was sent to an institution 42 years ago. “She was my best friend,” he said. “I just wish I could know where she was and see her again.”

Shawna Gagnon, 49, of Montgomery, Alabama said her sister Zena (Xena) was taken to a California hospital 43 years ago “where people hollered and were tied to the beds.”

Filmmaker Jeff Daly, creator of the documentary “Where’s Molly?”, has been working to find family links for the estimated 250,000 Americans who live in group homes or state institutions with no family contacts. He and the nonprofit ArcLink have built a relative search database that has already fostered more than 100 reunions."

On a personal level, I have seen Group Home settings that have provided a wonderful alternative for people with disabilities, to be able to live in a less restrictive setting from that of an institution. I have witnessed people being able to transition from an institution, to group home and eventually, live in their own home with the assistance of a personal care attendant.

Please pass this information along to your friends or feel free to post it to your blog.

Swine Flu and children with disabilities

I came across this information via the associated press:
"Of the first 36 U.S. children to die of the swine flu since it was identified in April, almost two-thirds had epilepsy, cerebral palsy or other neurodevelopmental conditions, according to a report from the U.S. Centers for Disease Control and Prevention. In a previous flu season, only a third of the children who died of the flu had comparable underlying conditions."

Ed. Dept. Gives Guidance on Providing Special Education During a Swine Flu Outbreak

The U.S. Department of Education has offered some legal guidance to schools about their requirements to educate special education students in times of a swine flu outbreak.

Some schools closed their doors after cases of swine flu first appeared last spring. Not much was known about how schools would handle educating students with disabilities if there were ever long school closures or long absences by students because of the H1N1 virus. With a new school year under way, the U.S. Department of Education released legal guidelines Sept. 1.

Federal laws like the Individuals with Disabilities Education Act, the Americans with Disabilities Act, and Section 504 of the Rehabilitation Act do not specifically address what schools should do if they are closed for extended periods of time for special circumstances like the swine flu, the guidance says, but schools must be sure not to discriminate against students with disabilities in providing services.

When educational opportunities are provided to the general student population, students with disabilities must have equal access. To “the greatest extent possible,” the students should receive the services in their Individualized Education Plans and Section 504 plans, the guidelines said.

If schools are closed and do not provide any educational services to the general student population, then they would not be required to provide services to special education students either. But once school resumes, the schools need to determine whether a student with a disability needs compensatory education to make up for any skills that may have been lost, the Education Department said.

Technology will be helpful in times of a swine flu outbreak, the guidelines said. The department suggests that school officials consider ways of providing educational materials in accessible formats or through the use of auxiliary aids and services in order for a student with a disability to participate in a distance-learning program.

If a school continues to teach the general school population during an H1N1 outbreak, but is not able to provide services to a student with a disability based on that student's existing IEP, the student’s IEP team determines which services can be provided to best meet the child’s needs.

The team may meet by teleconference or other means to determine if some, or all, of the identified services can be provided through alternate or additional methods such as through tutoring by phone, the Internet, or closed-circuit programming. Schools should use this same plan for students who have a Section 504 plan. Then when school resumes, the teams can assess what makeup services would be needed, the guidelines said.

IEP teams would not be required to meet in person if a school closes. IEP teams,
however, must continue working with parents and students with disabilities, including conducting informal assessments or formal assessments of the student, including parent surveys and standardized reports, and offer advice, as needed. If an evaluation of a student with a disability requires a face-to-face meeting or observation, the evaluation would need to be delayed until school reopens. Evaluations and reevaluations that do not require face-to-face assessments or observations may take place while schools are closed, if the parent consents, according to the guidelines.

For special education students who have lost skills because of prolonged absences from school, the IEP team should determine to what extent compensatory services are needed. These services can be delivered by providing extended school-year services, extending the school day, providing tutoring before and after school, or providing additional services during regular school hours, the guidelines said.

Here is a link to the full text of the guidelines.

What Is A Disability?

Disabilities can be defined in many ways. To the general public, most people think that a disability is something physical, something that you can instantly see. In reality, people with a physical disability are the minority in the disability community. It's the unseen disability that is most common, so here are just a few examples of what a disability might be.

For instance, disabilities can include:

• mental impairments such as mental illness

• delayed learning etc.

• sensory impairments such as hearing and seeing

• physical ailments

• traumatic brain injuries

• learning disabilities

• chronic fatigue

• medication induced disorders

• and many many more.

The Americans With Disabilities Act (ADA) General Definition of a disability is:
*References: TAM I-2.2, TAM II-2.1000, TAM III-2.1000

The ADA has a three-part definition of "disability." This definition, based on the definition under the Rehabilitation Act, reflects the specific types of discrimination experienced by people with disabilities. Accordingly, it is not the same as the definition of disability in other laws, such as state workers' compensation laws or other federal or state laws that provide benefits for people with disabilities and disabled veterans.

Under the ADA, an individual with a disability is a person who:

1. has a physical or mental impairment that substantially limits one or more major life activities;
2. has a record of such an impairment; or
3. is regarded as having such an impairment.

Living life with a disability covers a range of emotions and experiences that are almost limitless! It is rarely "easy", but we want you to know that life with a disability is not insurmountable, in fact, we have a vast amout of personal accounts from people with a disability that will be contributing to this blog. They live full, productive, mainstream lives. We call it Independent Living.

Now we would like to introduce the Independent Living Philosophy to you. Independent living is participating in day-to-day life, living where you choose and making decisions that lead to independence through self-determination.

Millions of people all over America who experience disabilities have established lives of independence. They fulfill many different roles in their communities, from employers and employees to marriage partners, parents, students, athletes, politicians, taxpayers-the list is unlimited. In most cases, the barriers facing these people haven't been removed, but these individuals have been successful in overcoming or dealing with them.

Independent living should not merely be defined in terms of living on one's own, being employed in a job fitting one's capabilities and interests, or having an active social life. Independent living has to do with self-determination. It is having the right and the opportunity to pursue a course of action. And, it is having the freedom to fail and to learn from one's failures just as non-disabled people do.

Our goal here, is to help others gain employment, increase life skills, break down barriers, help you to find ways to successfully transition into "Life".

We want to hear your comments on experiences that you have found helpful in becoming successful or those experiences that have limited or held you back from living life to your fullest ability.

Please use our "comments" option below or send us a question using the "Ask Us A Question" box on the left side of the screen.

We look forward to hearing from you!
Brenda and Sharon