On January 29th, Illinois Governor Rod R. Blagojevich and Illinois Department of Veterans' Affairs Director Tammy Duckworth launched the Illinois Warrior Assistance Program – a first in the nation program that will screen returning Illinois National Guard members for a traumatic brain injury (TBI) while offering TBI screening to all Illinois veterans, and a 24-hour toll-free psychological helpline for veterans suffering from symptoms associated with Post Traumatic Stress Disorder (PTSD). The Illinois Warrior Assistance Program confidential helpline, 1-866-554-IWAP (4927), will be available and staffed around the clock by health professionals to assist veterans, day or night, with the symptoms associated with PTSD and to screen for a possible TBI. For more information, visit www.illinoiswarrior.com .
IMPROVING TRANSITION OUTCOMES FOR STUDENTS WITH DISABILITIES
Sponsor: Representative Rosemary Mulligan
House Bill 4822 will improve transition outcomes for high school students with disabilities by:
Incorporating the more stringent secondary transition requirements of IDEA into the Illinois School Code
Stressing that school districts must follow IEP procedures in developing, reviewing, and revising transition plans
Providing a referral, monitoring and review process when a student is referred to an outside entity such as employer or vocational center
Adding benefits planning and work incentives counseling to the array of possible transition services.
Last action: Session Sine Die, 01/13/09.
For more information:
http://www.ilga.gov/legislation/billstatus.asp?DocNum=4822&GAID=9&GA=95&DocTypeID=HB&LegID=35623&SessionID=51Illinois House Bill 2547 went into effect January 1, 1020. It will extend the coverage of the Illinois Human Rights Act to allow the Human Rights Commission to address situation in which school districts are aware that a student is being subject to harassment or bullying in the classroom and fails to take corrective action.
This is an important step in making clear to districts that they cannot be passive or ineffective in response to situations where children are being subjected to serious or ongoing harassment, intimidation or bullying by other students (or staff).
COMPREHENSIVE PRESCRIPTION DRUG COVERAGE FOR PERSONS WITH DISABILITIES AND SENIOR CITIZENS
Sponsors: Representative Jack Franks; Senator Debbie Halvorson
HB 4449 would provide all Medicare-eligible persons with incomes up to 250% of the federal poverty level Illinois Cares Rx Plus Coverage instead of the Basic coverage they now receive.
This means that individuals with disabilities with incomes up to 250% of the federal poverty level would be able to secure State assistance with ALL of their prescriptions on the Medicare Part D plan.
It also means that Illinois Cares Rx would cover 80% of the cost of prescription drugs for these individuals when they reach the Medicare Part D "doughnut hole".
Re-referred back to the House Rules Committee 7/1/08. Please urge all Senate/House members to support this important bill. 01/13/09 Session Sine Die
For more information:
http://www.ilga.gov/legislation/billstatus.asp?DocNum=4449&GAID=9&GA=95&DocTypeID=HB&LegID=35026&SessionID=51Letters to Governor Quinn. This cut in the Personal Assistance Program (PA) hurts many. Please read the letters below and compose your own letter to our Governor. Thank you.
The Honorable Pat Quinn
Governor, State of Illinois
Second Floor, Statehouse
Springfield IL 62726
Dear Governor Quinn:
I have learned that one of the budget cuts you made to the Home Services Program will eliminate contracts that 22 Centers for Independent Living have to provide training to persons with disabilities who rely on personal assistants (PA’s) for services in their home that prevent their institutionalization in nursing homes, recruits and provides training to potential PA’s, and maintains a referral list of trained PA’s. I am writing to strongly urge you to reconsider this cut for reasons I will explain.
This program is a shining example of your stated principle to reduce demands on higher-cost programs by investing in less costly prevention and intervention services. The recipients of this program are people who have been determined eligible for admission to a nursing home, but who want to remain in their own home. They are informed about and referred to the Home Services Program. In addition, they are trained in skills necessary to manage their personal assistant (PA). They are referred to potential PA’s from a list of candidates who have been recruited and trained by the Center for Independent Living. Center staff assist them in learning their responsibilities to complete paper work and sign their PA’s time sheets after assuring they are accurate. Follow up assistance is always available. For each consumer served by a Center who remains in their own home, the amount the state pays for Home Services is approximately 1/3 the cost of maintaining that same person in a nursing home. Over 2,000 persons receive these services each year.
Since 1999 the Centers have contracted with the state to conduct a community reintegration program, working with persons with disabilities under the age of 60 who live in nursing homes and wish to reintegrate into the community, with the agreement of their medical professionals. Each Center’s PA training program is closely intertwined with the Community Reintegration Program, helping the consumer develop the skill they need to manage the PA arrangement. Over the years, 1,500 individuals have reintegrated, saving the state tens of millions of dollars. The loss of the PA training contracts will seriously impede the Community Reintegration Program and diminish outcomes, costing the state more for nursing home care, and robbing many individuals of the opportunity to regain the freedom and dignity that comes with being in control of one’s own life.
Centers for Independent Living represent the cornerstone of the recently implemented Money Follows the Person program. This is a federal initiative intended to rebalance Medicaid long term care expenditures and eradicate the institutional bias that continues to drive up Medicaid costs. Rebalancing has long been expressed as a priority of your administration. Using the model of the Community Reintegration Program, Center staff serve as transition coordinators, providing all services needed to allow nursing home residents to successfully transition to a home in the community. The state receives an enhanced Medicaid match for each person transitioned for the first year of their community services. Over the life of the program, the state will gain $55 million in enhanced match.
Of the four pilot projects, the one conducted by the Centers is the only one operating statewide. As with the Community Reintegration Program, the PA training program is a significant component of the Money Follows the Person program. Without the ability to tap into these services, finding appropriate PA’s for consumers ready to transfer will become a serious barrier to successful transitions.
As you can see, the elimination of the PA training program will dismantle the foundation that allows the Centers to carry out these important programs that save the state money and improve the quality of life for so many.
While canceling this program will eliminate $1.6 million in cash payments this year, the long term cost to the state will be many times that amount in terms of higher Medicaid costs for institutional care and lost enhanced match for community transitions not accomplished.
For these reasons, I feel it is imperative that you re-examine this specific cut, and reverse this decision. We fully understand the enormous burden you have dealing with our state’s deficit, and we appreciate your struggle. We feel strongly, however, that this cut would actually lead to additional budget problems.
Thank you for your consideration. I would be happy to discuss this further with you or your staff.
Sincerely,
Ann Ford
Executive Director
Illinois Network of Centers for Independent Living
Honorable Pat Quinn
Governor, State of Illinois
207 State House
Springfield, IL 62726
Dear Governor Quinn:
You made a mistake but you can correct it. The Springfield Center for Independent Living (SCIL) just learned our Personal Assistant Contract through the Home Services Program at the Division of Rehabilitation will end September 30, 2009. Our program assists people with disabilities to recruit and train in-home Personal Assistants and prevents the need for institutionalization. Please do not end this essential program that helps people with disabilities remain independent.
As you may know, this program is in keeping with the U.S. Supreme Courts Olmstead Decision of 1999. In this decision the Supreme Court ruled that to deny a person with a disability the option to live in the least restrictive environment is discriminatory. The Department of Human Services, Home Services Program is one program the State of Illinois can be proud of as we work to comply with the Olmstead Decision of 1999.
Many, if not most, of the people with disabilities at SCIL rely on their Personal Assistants to get them in and out of bed, provide personal grooming needs, and other essential household tasks. The financial burden to the State of Illinois will likely increase as individuals, now living independently with the use of a Personal Assistant, will have no choice but to end up in a nursing home.
Whether you support the Home Services Program from the position of a human services philosophy or one of fiscal conservatism, or both, individuals with disabilities and the State of Illinois will benefit from Personal Assistant Programs at Centers for Independent Living.
Please reinstate the funding to Personal Assistant Contracts for FY 2010 to all Centers for Independent Living
Pete Roberts
Executive Director
Springfield Center for Independent Living
HEALTH BENEFITS FOR WORKERS WITH DISABILITIES RETAIN ELIGIBILITY IF DISABILITY IS "MEDICALLY IMPROVED"
Sponsors: Representative Elaine Nekritz; Senator William Delgado
Would allow a person with a disability who is covered under the Health Benefits for Workers with Disabilities (HBWD) program to retain HBWD eligibility even if the Social Security Adminsitration determines that the person has a medically improved disability
Often an individual's disability has improved because he or she has medical assistance under HBWD. Without this assistance the individual would very likely be unable to maintain employment and would go back on SSI and regular Medicaid.
HB 5251 would, for example, allow a person with a seizure disorder to obtain prescription medications that would permit that individual to control symptoms and maintain employment.
Currently a finding that an individual has a medically improved disability will likely result in termination from HBWD, loss of healthcare coverage, loss of employment and a return to SSI and Medicaid.
Re-referred to the House Rules Committee 7/1/08. For more information: http://www.ilga.gov/legislation/billstatus.asp?DocNum=5251&GAID=9&GA=95&DocTypeID=HB&LegID=36500&SessionID=51
FORMULA FUNDING
For years INCIL has been trying to get the State to implement a formula for providing funding to Centers for Independent Living so they can support their operations and expand their services to reach all who need them.
This year the budget introduced by the Governor includes an amount of $2 million that would be divided among all 23 centers to begin implementing the formula.
IT IS VERY IMPORTANT THAT THIS AMOUNT NOT BE REMOVED FROM THE BUDGET DURING THE COMING NEGOTIATIONS.
During the coming weeks there will be many changes made to the budget, and many negotiations among party leaders to work out the final budget. This would provide a much needed increase to all Centers, and allow them to reach more people with their advocacy and services.
When you meet with your legislators, please ask them to urge their leaders to be sure this funding remains in the final budget.
Last Action: HB 1655 was referred to the Appropriations-Human Services Committee 2/27/07. As of 7/1/08 it is still in committee.
For more information go to:
http://www.ilga.gov/legislation/BillStatus.asp?DocNum=1655&GAID=9&DocTypeID=HB&LegID=30468&SessionID=51&GA=95&SpecSess=0
Thomas, at the nursing home after his accident.
By Shirley Black, Reintegration Coordinator
Thomas Mabie’s life
changed on March
29th, 2006 when he
was involved in a motor
vehicle accident.
He was admitted to
the hospital with a C-
7 facet fracture and
multiple closed head
injuries. Tommy (as
he prefers to be
called) was in a coma through much of his stay at the
hospital. He was put on a ventilator and given a
feeding tube. The hospital was able to take Tommy
off of the ventilator, but left the feeding tube for medication
and nourishment because he was losing too
much weight.
On June 5th, 2006 Tommy was transferred to Capital
Health Care Center. After Tommy had been at the
nursing home for 2 months, Shirley Black, SCIL’s Reintegration
Coordinator was invited to visit him.
Tommy’s family was present for the first meeting.
Shirley remembers that first day she met with
Tommy: “It seemed he was in a constant state of
panic. His room was filled with his entire family.”
Tommy Junior, who is in his early 20’s, had to become
his father’s legal guardian. Tommy Jr. was eager
to learn how to help get his father back home.
Shirley explained the reintegration program to
Tommy (Sr.), Tommy Jr.., and other family members.
A plan was developed to move Tommy out of the
nursing home in September.
Tommy faced many physical problems; he was able
to walk with a walker if supported by another person,
although use of a wheelchair was frequently necessary.
He was confused, upset, and in a constant
state of agitation. Tommy would not leave his room
at the nursing home to eat because he was afraid
that his room would be taken away from him. When
his family took him home for the afternoon, he would
insist that someone call the nursing home to make
sure he still had his room. The nursing home staff
would have to pretend to lock his door to get him to
go to the shower room. When Shirley tried to talk to
Tommy in the nursing home he would only say “Yes”,
“I don’t know”, or “Thank you.” A tent was placed
around the bed because Tommy would get confused,
try to climb out of bed and fall onto the floor.
After careful planning by SCIL’s Reintegration staff,
and with the support of his family, Tommy moved out
of the nursing home and into his brother’s home on
September 15, 2006. Tommy had a wonderful Personal
Assistant (PA) Frances who assisted him with
his daily care needs. Frances transported Tommy to
all of his therapy appointments and worked with him
daily to develop physical strength and increase his
memory and communication skills. Tommy told
Shirley that when his feeding tube was first removed
it really scared him. He said for months he would
hold a wash cloth over the closed hole while in the
shower and was afraid to get in the swimming pool.
Tommy thought if he got in the pool the water would
rush into his stomach and cause him to sink to the
bottom of the pool and drown. He worked every day
to build physical, emotional and communication
skills. Frances assisted him to use the walker to
walk around the block over and over until he could do
it without assistance. Tommy then moved up to
walking around the block with Frances while using
his cane. Eventually Tommy could walk independently.
Tommy and Frances worked on other physical
skills like swimming and riding a bike. Eventually
Tommy could swim laps, ride a bike and cook breakfast.
After Tommy moved out of the nursing home, his
friends and family had a fundraising event at one of
the clubs at Lake Springfield. The woman who was
tending bar that night knew Tommy from high school.
Tommy said he summoned all of his courage and
asked her for her phone number, and to his surprise
she gave it to him. As of September 30, 2007
Tommy is in a long term relationship, has passed his
drivers test, and is talking about going back to work
in the very near future. Because Tommy has worked
so hard and made such amazing progress his personal
assistant, Frances, completed her last day of
work as his PA on December 1.
Tommy visited SCIL in December. He drove up in his
very own vintage car. SCIL staff couldn’t resist taking
a picture! (included on this page) Tommy was full of
smiles as he beamed at the camera. He told Shirley
and Christina Bormida, Reintegration Assistant, that
he had made contact with a potential employer and
might have a job within the next 3 months. He
laughed with Shirley and Christina as he entered the
building and seemed to be a person who has much
to look forward to.
101 Accessible Vacations
101 Accessible vacations is published by Demos Publishing and is the first book of its kind. It is a must have resource for wheelchair- or scooter-users, slow walkers, and travel agents. It's a guide to barrier-free travel.
101 Accessible Vacations is available at bookstores, through the publisher (800-532-8663) or on-line at www.101AccessibleVacations.com. Visit the web site to read a sample chapter, and see the table of contents for more information.
Information via email from author, Candy Harrington.
