NEWS News: In the Headlines
Community Focus:
More Students With Disabilities Heading to College
Tuesday, December 14, 2011
by Nirvi Shah
When Andrew Van Cleave thought about what he wanted to do after high school, this son of two university graduates came up with the same answer many his age come up with: go to college.
Until the past decade, though, college wasn't much of an option for students, including Mr. Van Cleave, who have significant intellectual impairments.
This month, the 24-year-old, who has an intellectual disability and ADHD, became one of the first graduates of a two-year program at Vanderbilt University designed for students with severe cognitive disabilities. He starts a job next month.
Vanderbilt's Next Steps program is one of many created for this group of students in the last 10 years. The programs have grown in number from about 15 in 2002 to almost 170 now, as tracked by Think College, a Boston organization that does research about this new breed of programs and offers guidance about them for professionals, families, and students.
The growth is due in part to changes in federal law that have increased the expectations of such students in elementary and secondary school.
"We've had now 30 years of access for students with disabilities to go to school, and they're coming out of that system with a different expectation: Their education should continue," said Eric Latham, the executive director of Pathway, a college program for students with intellectual disabilities at the University of California, Los Angeles.
Earlier this year, a national study found that six years after high school, students with disabilities were less likely than peers to have attended any college55 percent compared with 62 percent, though that includes students with all types of disabilities. Among people with intellectual disabilities, the rate of employment is just 9 percent.
The push for creating college opportunities for students with disabilities has also come from parents and advocacy groups, said Stephanie Lee, a senior policy adviser for the National Down Syndrome Society, based in New York.
She is one of those parents: About 10 years ago, Ms. Lee's daughter, Laura, who has Down syndrome, asked her mother if she would attend college at Lafayette College in Pennsylvania like her brother. When Ms. Lee researched what options her daughter had, she found "there was very little out there."
The only real choices were for Laura to stay in high school until she was 21, which federal law allows some students with disabilities to do, or work in a sheltered environment for less than minimum wage, mostly with other people with disabilities.
Ms. Lee, who previously worked for the U.S. Department of Education's office of special education programs, approached administrators at George Mason University, in Fairfax, Va., about creating a program for Laura and similar students. They said yes.
"I was very nervous about dropping my daughter off at this big university campus. It turned out better than I ever could have expected," Ms. Lee said. The program, called Mason LIFE, or Learning Into Future Environments, now serves more than 40 students and has a vocational-internship option.
Successful Transition
As for Laura Lee, today she lives on her own and works at the World Bank, in Washington, two days a week, earning more than $12 an hour doing office work. She sometimes travels alone from the city's Virginia suburbs on public transportation to get to her job.
"It is possible for young people with intellectual disabilities to transition into paid, competitive jobs," Stephanie Lee said. "Postsecondary opportunities really give students an opportunity to get on a different path."
Tammy Day, the director of Next Stepsthe program at Vanderbilt, in Nashville, Tenn., where Andrew Van Cleave enrolledsaid it allows students to attend university-level courses and work on vocational certificates. It also enables them to learn how to keep an apartment near campusthough the program doesn't yet have a housing componentand spend hours a week with Vanderbilt students who don't have such cognitive disabilities.
Ms. Day spent 10 years helping students with disabilities plan for life after high school but had concerns for students who chose to stay in high school.
"It's a pretty rare school system that has found a way to make that plus-four years meaningful," she said. "We found students regress. You're 18, 19, 20, 21 and you're around the 14- and 15-year-olds."
In some ways, the Next Steps program is more rigorous than a traditional college student's schedule, Ms. Day said. It requires students to exercise three hours a week, use university-issued netbooks to send email and keep journals, and take turns shopping and cooking for their peersin addition to class work.
Enlisting State Support
When Donald Bailey rejected the idea of staying in high school past age 18, his father joined with other South Carolina families to form a small nonprofit group, the College Transition Connection, to create a college opportunity for his son. The younger Mr. Bailey has PDD-NOS, or pervasive developmental disorder-not otherwise specified, which is a disability on the autism spectrum.
Eventually, his father, Donald Bailey Sr., persuaded the state legislature to provide seed money to colleges that would establish post-high-school programs for students with cognitive disabilities; now, there are five separate options statewide, including one at the University of South Carolina, in Columbia, where Donald Bailey Jr. graduated in May.
His was a four-year program, though he finished it in three. The program involved living in an apartment, with roommates, 115 miles away from his parents.
The lessons he learned were invaluable, even those that didn't directly deal with coursework.
"It took him a while to get used to getting up at the right time and get to class at the right time," the elder Mr. Bailey said. "For an 8 a.m. class, at first, he would get up at 8 a.m."
Hoopa Man Transitions Back Home from Nursing Facility
Wednesday, December 25, 2011
by Megan Hansen / Times-Standard
A ray of sunshine peeks through the makeshift curtains of a modest home in Hoopa, illuminating the face of a man who smiles when he talks of his recent move back home from a skilled nursing facility. For someone who's had five back surgeries and a lifelong history of serious medical problems, 49-year-old Tony Meeker is surprisingly capable of navigating through his home with just the help of a walker.
This wasn't always the case. Meeker was told by doctors two years ago that he'd never walk again.
Sitting in an armchair in front of the television, Meeker said he almost died four times during his latest ordeal and that it's been a long journey coming back home.
It took almost two years, but I'm back home with my dogs, Meeker said.
He vaguely remembers the New Year's Eve in 2009 when his mother, Diane Annand, crawled through his doggy door and found him sprawled out on his hallway floor, unconscious. He was airlifted to the UC Davis Medical Center in Sacramento where he spent close to two weeks drifting in and out of consciousness and hallucinations. Doctors eventually discovered that he had a drug-resistant staph infection that injured his cervical spine.
When he regained consciousness, Meeker discovered the bacterial infection had paralyzed the lower half of his body and severely affected his upper extremities.
I could barely move my right arm, Meeker said. The source of the infection was traced to a small cut on Meeker's leg. Though the staphylococcus aureus bacteria can live harmlessly on the skin, it can cause problems when it invades wounds.
After Meeker was transferred to another intensive care unit, a doctor broke the news to him and Annand that Meeker would never walk again and said not to bother trying.
He was very blunt and adamant that he's never walking again, Annand said about the doctor. They said stem cell research might help (Meeker), if he's lucky.
Meeker was relocated to the Golden LivingCenter in Redding where he began intensive physical therapy. He said it was difficult at first to be motivated to work his extremities after everything the doctors told him. In addition, Meeker said, he suffered from leg spasms that shook his body as if it were being riddled with bullets from a machine gun.
When I got dropped off there, I thought I'd never leave, Meeker said. I thought, 'That's the end of the world for me.'
His attitude soon changed as he began stretching his muscles, using arm weights and undergoing electrical muscle stimulation sessions. Slowly, he gained strength in his hands and adopted a mantra of never give up, never surrender. After months of painful and difficult therapy, Meeker took his first steps in August 2010.
I was so happy, Meeker said, crediting the center's staff and one nurse in particular that he only knows by the nickname Pineapple.
Annand discovered in the following months, after placing a call to the Eureka-based Tri-County Independent Living organization, that her son might be able to go home. The nonprofit told her about the California Community Transitions program that it's facilitating with other similar agencies throughout the state.
Chris Jones, executive director of the Tri-County Independent Living organization, said the transition program is a federally funded initiative that allows people to live independently instead of at care facilities. She said the program is unique because it allows funding to follow the person, meaning Medicare pays for care whether a person is in a nursing home or in their own home.
Medicare will pay for everything in a nursing home, but it wouldn't pay for services if they wanted to live at home, Jones said about the typical system.
She said that as part of the program, Tri-County is responsible for becoming a medical provider and establishing a system to identify eligible participants. The agency is responsible for acquiring the necessary medications, medical equipment and medical care services for those it helps.
We work with their medical providers, Jones said. It requires case managing and looking at the person's whole world.
In Meeker's case, this responsibility also meant retrofitting his home to make it more accessible. Jones said Meeker's bathroom was remodeled to include a walk-in shower, accessible toilet and better lighting. His kitchen floor was resurfaced, too.
In Tony's case, Medi-Cal paid for the home modification, Jones said. We work to set up all the resources and services he needs so he can live at home.
Meeker is truly at home as he walks around his house with his beloved dogs, Honey Bear, Yogi Bear and Pepper, barking at his feet. He said he was able to transition back into his home on Nov. 19 of this year -- a move his mother believes will save the state thousands of dollars in care costs.
Jones said it's more costly to the state to place people in skilled nursing facilities instead of allowing them to stay in their own homes. It's three-and-a half times more expensive to live in a semi-private room at a nursing home instead of utilizing a home health aide, according to a study published in October.
The MetLife Mature Market Institute's 2011 Survey of Nursing Home, Assisted Living, Adult Day Services and Home Care Costs report states the national average yearly rate for a semi-private room in a nursing home is $78,110. That figure jumps to $87,235 a year for a private room, versus a yearly rate of $21,840 for a home health care aide. The national average yearly rate of residing in an assisted living community is $41,724.
Meeker's home care costs are likely even lower than the national average as he doesn't utilize any kind of in-home supportive services. He's able to care for himself, and his mother, who lives next door, helps out if he needs it.
Not only is it cheaper to live at home, but Jones said being in one's own space has other important benefits.
People live longer, they're healthier and they have a better outlook on life, Jones said.
Now that he's finally back home, Meeker said he plans to continue the lessons he learned in Redding by lifting weights and losing some of the weight he gained while at the facility. He plans to continue his physical therapy sessions at the start of the new year with a doctor in Willow Creek.
Meeker's not sure what he wants to do with his newfound freedom, but he knows he wants to do something positive with his life. He's considered taking classes at the College of the Redwoods satellite site in Hoopa. For now, he's happy to ponder the possibilities.
Life's too beautiful and wonderful to let it sit and just go by, Meeker said.
Article taken from: http://www.times-standard.com/ci_19617592?IADID=Search-www.times-standard.com-www.times-standard.com
20% In-Home Supportive Services (IHSS) Cuts Fact Sheet:
Sunday, January 1, 2012
by Disability Rights California
Here is what you need to know about the IHSS cuts:
1. The state plans to cut IHSS hours by 20% on January 1, 2012.
2. Your hours will not be cut if you ask for an IHSS Care Supplement no later than January 3, 2012.
The sooner you get your application to the county the better.
3. The state will mail reduction notices and the application for the IHSS Care Supplement on or before December 15, 2011. So, check your mail!
4. Read our publication so you know how to get the IHSS Care Supplement. In-Home Supportive Services (IHSS) Program
20% Cut in Services
BUDGET CUTS
The 2011-2012 California budget was based on how much money the state thought it
would receive. By December 15, 2011, state officials will say how much money the
state thinks it will actually take in. If the state does not have enough money, state law
says that IHSS service hours must be cut by 20%. The cut in IHSS hours will take
place as of January 1, 2012.
The IHSS 20% cut in service hours will be based on the most recent IHSS assessment
of need. For example, a consumer who has 100 hours per month of IHSS already had
hours cut by 3.6%, or 3.6 hours. This consumer will be cut by an additional 20%, or 20
hours. This consumer will be left with a total of 76.4 hours per month. This is a total
cut of 23.6%, or 23.6 in total authorized hours.
IHSS 20% CUT IN SERVICES NOTICE
The state will send IHSS consumers a notice about the 20% cuts by December 15,
2011. The notice will include the consumers total authorized IHSS service hours now,
and total IHSS service hours after the 20% cut. The state will also add a message on
providers time sheets, telling them about the 20% cut.
The 20% cut in services notice will also tell IHSS consumers about how to apply for an
IHSS Care Supplement. If you mail or bring in to the county your application for
the IHSS Care Supplement by January 3, 2012, your IHSS hours will be restored
until the county takes action on your application. If you bring in your application be
sure to get a receipt.
HOW TO APPLY FOR THE IHSS CARE SUPPLEMENT
Everyone who gets a notice about the 20% cuts in December can apply for the IHSS
Care Supplement. If you are approved for the IHSS Care Supplement, you will get
some or all of your IHSS hours back.
State law says that you are eligible for the IHSS Care Supplement if the 20% cut in
IHSS service hours will put you at serious risk of out-of-home placement. Out-of home placement means that you would have to leave your current home and live
somewhere else such as a board and care home or a nursing home.
In your application for an IHSS Care Supplement, you should explain to the county why
you need to get back all or some of your authorized IHSS hours.
For example:
- If you do not get daily meal clean-up, you will be at risk of a pest infestation or
you might fall if you try to clean up after meals by yourself, or
- You have a lot of medical appointments and your health will get worse if your
IHSS provider does not have enough time to take you to and from medical
appointments, or
- You will not remember to eat, or will not finish your meals without prompting
from your IHSS provider, or
- You have been threatened with eviction because you have a problem with
hoarding and cluttering and need all of the IHSS hours to avoid eviction, or
- Your IHSS provider will not have enough hours to keep working and if your
IHSS provider quits, you will not be able to find anyone else who will do the
work.
Note: You have the right to determine how IHSS tasks will be prioritized or
rearranged to best meet your needs after the 20% reduction. No one including
the county can tell you how to prioritize your IHSS tasks to stay within the 20%
reduction.
FUNCTIONAL INDEX RANKS
In deciding if you are eligible to receive an IHSS Care Supplement, the county will look
at something called Functional Index Ranks. Functional Index Ranks are measures
of your functional limitations. Functional Index Ranks measure the kind of help you
need in order to do various IHSS tasks.
You can help the county get up-to-date information about your functional limitations by
asking your doctor to fill out the attached survey. This survey explains what your
Functional Index Ranks really are and what help you need performing IHSS tasks.
You can mail the survey with your application for the IHSS Care Supplement if your
doctor completes it in time. The survey is not required but it may be helpful. You
can also mail in or drop off the survey if it is completed later.
Whatever you do, do not delay sending in your IHSS Care Supplement application
for any reason! Be sure to mail it in by January 3, 2012.
SOME IHSS CONSUMERS ARE EXEMPT FROM THE 20% CUTS
IHSS Consumers are exempt from the 20% cuts if they also get services under one of
the states Home and Community Based Services Waivers, which include:
- AIDS Waiver,
- DD Waiver for Regional Center consumers,
- Multipurpose Senior Services Program (MSSP),
- Nursing Facility/Acute Hospital (NF/AH) Waiver, and
- In-Home Operations (IHO) Waiver.
If you are on a waiver, you should not get a reduction notice. If you DO get a reduction
notice, the State has made a mistake and you should file an appeal and request a
state hearing right away. You should also call your Regional Center worker, MSSP
case manager or IHO case manager to ask for help.
APPEAL RIGHTS
Consumers who are denied an IHSS Care Supplement have the right to request a
hearing. At this time, we do not know whether consumers will get aid paid pending if
they appeal the denial of the IHSS Care Supplement, or if they appeal the 20%
reduction.
Consumers also have the right to request a reassessment or apply for an IHSS Care
Supplement at any time when there has been a change in circumstances that requires
a change in the amount of hours a consumer needs or there is a risk of out-of-home
placement. Consumers can request a hearing when denied reassessment or an IHSS
Care Supplement or to challenge a notice of action with which a consumer disagrees.1 of 8
Physicians Survey Regarding Functional Limitations
Your patient is a recipient of In-Home Supportive Services (IHSS). The
IHSS program provides attendant care services for people who cannot
perform certain tasks (i.e. activities of daily living) for themselves. The
services are provided in a persons home so the person can continue to live
safely at home.
As of January 1, 2012, IHSS hours will be cut by 20% for individuals who
are not at serious risk of out-of-home placement. Some or all of the hours
can be reinstated if your patient qualifies for the IHSS Care Supplement.
The County will decide eligibility for the IHSS Care Supplement based, in
part, on your patients Functional Index Ranks. Functional Index Ranks are
measures of functional limitations.
More information at http://www.disabilityrightsca.org/
Student Story Continued...
Now, at 23, the younger Donald Bailey lives on his own, works for Charleston's parks and recreation department, drives, and reads to 1st graders once a week.
"Our goals with these programs are not unlike any other program or that of any other parent," the senior Mr. Bailey said. "We wanted him to have the educational experience in college, be independent, [find] gainful employment."
Federal Financing
Specific changes to federal laws have encouraged more schools to set up programs like those at George Mason, UCLA, and Vanderbilt, and have given students with intellectual disabilities more support to attend.
Provisions in the Higher Education Opportunity Act in 2008 permit students with such disabilities, who may not have high school diplomas, to get work-study jobs and receive financial aid, including Pell Grants. The law also authorizes money to create and study programs that could serve as models for other colleges and universities around the country.
Think College, the Boston-based group, is coordinating and studying 27 programs in 23 states that were awarded five-year grants by the federal Education Department and will recommend ways programs can be accredited and what kinds of certificates graduates should be awarded, said Debra Hart, the director of the education and transition team for the Institute for Community Inclusion at the University of Massachusetts Boston.
"We know from the first-year data that there's immense variability regarding everything. This field has not had standards, guiding principles, none of that until recently," she said.
Even so, some of the grantees, including the UCLA program, are already showing promise, according to program data.
The UCLA program has graduated 37 students in six years, said Mr. Latham, its executive director. Of those graduates, all but seven are employed, continuing their education, doing an intensive internship, or enrolled in a day program. All but three live apart from their parents.
Mr. Latham said students who enroll initially say their primary goal is to learn to live independently. They get that experience living in an apartment building near campus.
As they go through the program, Mr. Latham said, students' goals shift to "How am I going to come out of here with a job?"
More federal legislation has been proposed to improve opportunities after high school for students with intellectual disabilities.
In November, U.S. Rep. Ander Crenshaw, R-Fla., introduced a bill that would allow families of people with disabilities to save for housing, education, and medical expenses using the same type of account, a 529 plan, that many families use to save for college. The bill, which has support in the Senate and among lawmakers from both parties, would also allow saving for expenses related to getting and keeping jobs, including job training and assistive technology.
Planning Ahead
Better planning from high school to work or school for students with disabilities could be required by the proposed TEAM actsas in Transition toward Excellence, Achievement, and Mobilitysponsored by Rep. Gregg Harper, R-Miss., whose son has Fragile X syndrome, a form of mental retardation. The laws would require schools to start working with students at age 14, as well as their families, on goals for life after school.
Although transition planning has long been required by federal law, "there's no monitoring, no accountability," said Barbara Trader, the executive director of TASH, formerly The Association for Persons with Severe Handicaps, in Washington. "The expectation for students leaving high school is ... that they will be college-ready. That expectation isn't clear for students with intellectual disabilities."
Recognizing the need to coordinate and link students with disabilities with information about their options after high school, the Washington-based HSC Foundation opened a center last month on the George Washington University campus, in Washington, devoted to just that. More than 40 health, education, and social-service organizations are now under one roof, and their information and meetings are available online to anyone in the country.
The transition from high school to college or work "is a challenge for everybody," said Thomas Chapman, the foundation's president and chief executive officer. "When you lay on top of that a physical, mental, or emotional challenge, you need a significant amount of expertise to address that properly."
Special coverage on the alignment between K-12 schools and postsecondary education is supported in part by a grant from the Lumina Foundation for Education, at www.luminafoundation.org.
