Much of the focus on growing Medicaid enrollment (up to 50.8 million, according to new Census figures) is on the people who can’t find work so they need Medicaid. But what about the people who need Medicaid so they can work?
That’s the population that Kansas policymakers had in mind when they created the WORK program in 2006. They’re mostly developmentally disabled adults who want to work, but require a little assistance around the house to stay independent. So the Kansas Medicaid office provides them with a cash allotment (averaging just under $1,700 per month) to pay for the help they need. WORK enrollees can hire an in-home aide or purchase other services themselves—or a state case worker will do the legwork for them.
It’s a small program—277 people were enrolled in June 2012—but it makes a big difference for its participants. Kathy Lobb, a 56-year-old with cerebral palsy, is one of them.
Kathy works 20 hours a week as a legislative liaison at the Self Advocate Coalition of Kansas (SACK), a statewide advocacy group that works on behalf of adults with developmental disabilities. Her work has included testifying before the Kansas legislature. But on a day to day basis, Kathy’s condition made it difficult for her to live on her own and work at the same time. Keeping track of her work schedule, running errands and maintaining a clean household—things most people take for granted—were a struggle for her.
As Mary Ellen Wright, who oversees the WORK program in the Kansas Medicaid office, explains, the financial assistance that people like Kathy receive from the federal government sometimes discourages them from working. The state’s Medicaid buy-in program had the same effect. Those who make too much to normally qualify for Medicaid but still have significant medical needs, can “buy in” to the program to get additional coverage. The amount of their own money they have to spend before the state support kicks in is on a sliding scale, based on how much money they make at their jobs.
“The higher your income goes up by working, the more you would have to pay for your care,” Wright says. “So people wouldn’t necessarily want to go to work because it’s not going to make their lifestyle any better.”
And even for those like Kathy who have jobs they’re passionate about, the routine can still be difficult. But through WORK, Kathy receives a monthly stipend to hire an aide who comes to her house for a few hours a day to help her out. Kathy picked the aide herself, putting her through a rigorous interview, she says with a laugh. The aide keeps Kathy on schedule for work, takes her on errands when she needs to go out, makes sure her house is sanitary and has even started her on a low-calorie diet so Kathy can lose some weight. She and other WORK participants also pay a premium into the state Medicaid program for other health coverage (between $55 and $152 monthly, depending on income, significantly less than they’d pay under the normal buy-in model) that ensures all their medical needs are covered.
With a little more structure and a little more money in her pocket, Kathy has stayed on at SACK and continues to advocate in front of state lawmakers for others in similar situations. She’s also started taking classes at the University of Kansas Disability Rights Center.
“Before, I just tried to do the best I could,” Kathy says. “But this program has made it much easier.”
Though stories like Kathy’s can be encouraging, state officials still know they’re working with limited resources for a unique program like WORK. The cash allotments cost Kansas about $5.6 million for the year. The amount that an individual receives is based on an independent analysis of their needs: it could be a personal assistant, like Kathy has, or an in-home medical device or a counseling service. Because WORK recipients have a limited budget, they’re expected to make smart financial decisions. For example, it might be cheaper for them to buy a microwave with their stipend instead of hiring an aide to fix their meals.
“The idea behind it is, if the people are controlling the money, maybe they’ll make better decisions than we will as a state doing it on the group level,” says Wright. “They’ll try to get the best bang for their buck, so to speak.”
So-called individual budget plans for long-term care aren’t necessarily new; 10 states had active programs or pilot programs in 2006, according to the Kaiser Family Foundation. But they’ve usually focused on the elderly, and helping people stay employed has never been one of their main goals. That could change, though. Wright says her office has fielded numerous calls from other states interested in emulating the WORK program.
And the early indication in Kansas is that the program’s population is less costly to the state. A University of Kansas analysis found that the Medicaid office spent $1,933 per member per month in 2010 on WORK enrollees—significantly less than the $3,254 the state spent on a comparable population enrolled in more traditional home and community-based care.
“People who are working are healthier. You’re more a part of a community,” Wright says. “If you have more money, you just live better.”
10 September 2012
Last updated at 13:07 ET
A mother-of-three believes she could lose £76-a-month in benefits because of what is dubbed a “bedroom tax”.
Carrie Southcott, 26, from Plymouth, says she needs separate rooms for her sons as two have cerebral palsy.
The government’s new social housing policy means she will be financially penalised as it requires the boys to share a room until they are 16.
It states: “It’s only right that we bring fairness back to the system and make better use of the housing stock.”
Under the Welfare Reform Act, due to be brought in next April, each person or couple in a household is allowed a bedroom, with children under 16 of the same gender and children under 10, regardless of gender, expected to share.
Continue reading the main story
We can’t up and leave, we can’t move out, we’re going to have to find the money from somewhere”
Parent of disabled children
Any household deemed to have more bedrooms than required will lose 14% of their housing benefit for one, or 25% for two rooms.
Miss Southcott said she needed a fourth ground-floor room built as her four-year-old son Jacob – who has cerebral palsy and relies on a feeding tube – was getting too heavy to carry upstairs.
The additional room would mean the household was classed as having two spare rooms, which will equate to £76 a month.
She said: “Essentially it’s discrimination because we have children with disabilities.
“We have no choice over the matter. We can’t up and leave, we can’t move out, we’re going to have to find the money from somewhere.
“We would like [the government] to re-think and possibly add a clause into the new legislation which prevents the families of disabled children from being penalised for having extra bedrooms that they need,” she said.
In a statement, the Department for Work and Pensions, said: “It’s not fair for people to continue to live in homes that are too large for their needs.
“From April 2013, tenants and landlords will have to consider the type of accommodation based on what tenants could afford if they were not receiving housing benefit, or if they were living in the private sector.”
However, it added it was providing £30m a year to help disabled people with an adapted property and foster carers.
According to the National Housing Federation, 30,000 households in the South West, or 28% of those living in social housing in the region, would be affected by the legislation.
Miss Southcott’s landlord, Plymouth Community Homes (PCH), said it was “still trying to seek clarification on the government’s ‘bedroom tax’ proposals”.
“We understand there may be occasions when tenants can appeal against a housing benefit assessment,” it said.
“Ms Southcott would need to speak to Plymouth City Council’s housing benefit team to discuss her circumstances.”
Oscar Pistorius is the most famous T44 athlete in the world. But what is a “T44 athlete”? We tell you.
The disability classification is simply a structure for competition at the Paralympics. Not unlike wrestling, boxing and weightlifting, in which athletes are categorised by weight classes, athletes with disabilities are grouped in classes defined by the degree of function presented by the disability.
Guide to major disability groups/categories
Athletes competing at the Games are now divided into four main disability groups.
1. Athletes with an amputation – “amputees”
2. Athletes with cerebral palsy
3. Athletes with visual impairment or blindness
4. Athletes with spinal injuries or other physical disabilities.
Guide to Classification
Once a decision has been taken on which disability groups can compete in the various sports, a secondary process called “classification” takes place. Classification helps Games organisers to group athletes with similar capabilities together in fair and equitable competition.
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During classification – which involves observation of sport-specific tasks and activities – athletes are assessed for their ability to perform in a particular event. In case of any dispute there would be a physical examination too.
“Ability” in this case refers to an athlete’s functional potential and is not an assessment of their disability: this is a complete reversal of the old systems that were clinical and medical in origin and often intrusive. This is why in
some sports, such as swimming, different disability groups are now able to compete against each other.
In other sports such as athletics, individual athletes are still defined by an assessment of their functional potential
but this can be combined with their disability group. There are several categories, for instance, of wheelchair racing for those with spinal injuries or congenital conditions that affect the spine, because spinal lesions can be in different places. The higher the lesion, the less function in the upper body and arms, for example.
Classification is an on-going process. When athletes start competing they are allocated a sport classification and may be re-classified a number of times throughout their careers. If an athlete’s condition improves or deteriorates, for example, their sport class may change.
For many sports a specific letter and number combination is used to describe a particular classification. So, for instance, all track events in athletics start with the letter ‘T’ and T51 is one of seven wheelchair track categories whilst T11–13 covers the three categories of visual impairment.
What are the disability groups?
The spinal cord, which travels from the brain through the backbone, is part of the central nervous system. It has 30
sections that give instructions to the body’s muscles. An injury or illness or a congenital condition can damage the spinal cord and cause paraplegia or quadriplegia. Paraplegia means paralysis of the lower limbs and all or part of the trunk. Quadriplegia means that the upper limbs are also affected. In sport, athletes are often
classified depending on the segment of the spine where the damage (or lesion) has occurred.
Cerebral palsy is a condition in which muscle tone, reflex, posture or movement are affected due to damage to the brain. This condition can occur pre-birth, at birth or as a result of a stroke or head injury. In sport, athletes with cerebral palsy are classified into groups depending on the level of damage which has occurred and to which muscle groups.
Athletes with an amputation have at least one major joint or part of an extremity missing (eg: elbow, knee). This may be congenital, due to injury or illness. In sport athletes are classified depending on whether the amputation is on an upper or lower limb; is single or double; is above or below the elbow or knee. Athletes in these categories may compete using wheelchairs or prosthetic (artificial) limbs.
There are varying degrees of visual impairment and athletes are given a classification depending on the level of useful vision they possess.
All other physically disabled classes
Athletes in this group have physical disabilities that do not fall into the other classification categories. This group includes those with multiple sclerosis and dwarfism, for instance. In general, this group is integrated to compete within the other disability groups according to ability in a given sport or event.
This group of athletes did not take part in the Games of 2004 and 2008 because there is on-going debate about eligibility. Discussions are taking place about their potential return in 2012.
Archery is open to athletes with a physical disability and classification is divided into three classes.
ARW1: Spinal cord and cerebral palsy athletes with impairment in all four limbs.
ARW2: Wheelchair users with full arm function
ARST: Standing: Athletes with full arm function but who have some disability in their legs.
This group also includes amputees, athletes with other physical disabilities and cerebral palsy standing athletes.
Some athletes in the standing group will sit on a high stool for support but will still have their feet touching the ground.
All disability groups can compete in Athletics but a system of letters and numbers is used to distinguish between them.
The letter ‘F’ is for field athletes, ‘T’ determines those who compete on the track while the number refers to their category.
11-13*: Track and field athletes who are visually impaired. (Athletes who are blind compete in Class 11. They are permitted to run with a sighted guide. Field athletes in this class are also permitted the use of acoustic signals (voice, electronic, clapping etc) in the 100m, long jump and triple jump. Class 13 athletes
have more useful sight than Class 12 athletes).
20: Track and field athletes who are intellectually disabled (a category which was suspended for the 2004 and 2008 Games).
31-38: Track and field athletes with cerebral palsy.
41-46: Track and field amputees and athletes with other physical disabilities. (Athletes in classes 42-44 must wear a prosthesis when competing. A prosthesis is optional in Classes 45 and 46.
T 51-56: Wheelchair track athletes.
B: Wheelchair field athletes.
Boccia is open to athletes with cerebral palsy who compete from a wheelchair and classification is split into four classes.
BC1: These athletes are able to project a ball once it is placed in their hand.
BC2: These athletes have poor functional strength in all extremities and trunk but are able to propel a wheelchair and do not need assistance.
BC3 – WAD (‘with assistive device’): These athletes have the most severe degree of impairment: players in this category work with an aide. Players in this category cannot grasp and release the ball and as such use a “chute” for the ball.
BC4: This division is for athletes with a severe impairment but not necessarily cerebral palsy. These players are not eligible to have an aide.
Cycling is open to amputees, athletes with other physical disabilities, cerebral palsy and visually impaired athletes who compete in individual road race and track events. Athletes with cerebral palsy are split into four divisions according to the level of their disability where Class 4 comprises the more physically able.
Visually impaired athletes compete together with no separate classification system. They ride in tandem with a sighted guide.
Amputee athletes, those with a spinal cord injury and athletes with other physical disabilities compete within the specific groups:
LC1: Riders with upper limb impairment.
LC2: Riders with impairment in one leg but who can pedal with both legs.
LC3: Riders with impairment in one lower limb who will usually pedal with one leg only.
LC4: Riders with impairment affecting both legs.
Athletes with more severe disabilities take part in handcycling and this is now included in the Cycling programme.
Athletes compete in three disability divisions based on functional ability:
HC Division A (Classes HC 1-3): These events are for athletes with complete loss of trunk and lower limb function.
HC Division B (Classes HC 4-5): These events are for athletes with
complete loss of lower limb function and limited trunk stability.
HC Division C (Classes HC 6-8): These events are for athletes with complete lower limb function loss but minimal other functional disabilities, or for athletes with partial lower limb function loss combined with other disabilities which mean that conventional cycling is not viable.
All disability groups can take part in Equestrian sport but riders are divided into four grades:
Grade 1: Severely disabled riders with cerebral palsy, other physical disabilities and spinal cord injury.
Grade 2: Athletes with reasonable balance and abdominal control including amputees.
Grade 3: Athletes with good balance, leg movement and coordination, including totally blind athletes.
Grade 4: Ambulant (able to walk independently) athletes with either impaired vision or impaired arm or leg function.
Five-a-side Football is played by athletes with a visual impairment. They are classified according to their level of sight, as B1, B2 or B3. Players in the B1 classification are considered blind, while those rated B2 and B3 are classified as visually impaired or partially sighted.
Seven-a-side Football is played by athletes with cerebral palsy. Classification is split into Classes 5 to 8. All classes are made up of ambulant athletes, from Class 5 who are least physically able through to Class 8 who are minimally affected. Teams must include at least one member from either Class 5 or 6.
Goalball is played by visually impaired athletes and a special rule means there is no need for classification: participants wear “black-out” masks to ensure everyone competes equally.
Judo is contested by visually impaired athletes only. There is no categorisation as competitors are divided by weight.
Powerlifting is open to all athletes with a physical impairment who meet the criteria set down by the IPC Powerlifting Sport Technical Committee. Examples of the type of disabilities that meet the criteria include: paralysis, cerebral palsy, lower limb amputations, frozen joints of the lower limbs etc.
Rowing is currently divided into four boat classes which are part of the World Championships programme:
LTA4 +: A four-person, sweep-oar boat plus cox with sliding seats. Open to athletes with an impairment but who have movement in the legs, trunk and arms. A boat can include a maximum of two visually-impaired athletes.
TA2x: A two-person sculling (two oars each) boat. For athletes with trunk and arm movement only. Has fixed seats.
AM1x: A fixed-seat single scull boat for men. Athletes have full movement in their arms only.
AW1x: A fixed-seat single scull boat for women. Athletes have full movement in their arms only. The LTA4+ and TA2x are mixed gender boats.
Sailing is a multi-disability sport with the amputee, cerebral palsy, visually impaired, wheelchair and other physical disability groups competing together. Competitors are ranked according to a points system where low points are given to the severely disabled and high points for less disabled.
The Sonar class, featuring a crew of three, must not exceed 12 points. The SKUD18 is a new two-person class in Beijing 2008.
Sailors in the single-handed 2.4mR must have a minimum level of disability which prevents them from competing on equal terms with Olympic sailors.
Shooters are divided into wheelchair and standing groups split into sub-classes determining the type of mobility equipment the competitor is allowed to use.
SH1: For pistol and rifle competitors who do not require a shooting stand.
SH2: For rifle competitors who have an upper limb disability and therefore need a shooting stand.
Both classes have three sub-divisions within them.
Swimming is the only sport that combines the conditions of limb loss, cerebral palsy (coordination and movement restrictions), spinal cord injury (weakness or paralysis involving any combination of the limbs) and other disabilities (such as Dwarfism and major joint restriction conditions) across classes.
Classes 1-10 are allocated to swimmers with a physical disability, Class 1 with the most severe impairment and Class 10 the least, for example a partial hand amputation.
Classes 11-13 are allocated to swimmers with a visual impairment. Class 11 will have little or no vision; Class 12 can recognise the shape of a hand and have some ability to see; Class 13 will have greater vision than the other two classes but less than 20 degrees of vision.
Class 14 is allocated to swimmers with an intellectual disability – although this category was suspended for the Athens 2004 and Beijing 2008 Games.
The prefix ‘S’ denotes the class for Freestyle, Backstroke and Butterfly.
The prefix ‘SB’ denotes the class for Breaststroke.
The prefix ‘SM’ denotes the class for Individual Medley.
The range is from the swimmers with severe impairment (S1, SB1, SM1) to those with the minimal impairment (S10, SB9, SM10).
Swimmers may have a different classification for, say, Butterfly than for Breaststroke. This depends on the way their impairment effects their ability to do the specific stroke. In any one class some swimmers may start with a dive or in the water and this is factored in when classifying the athlete.
Table Tennis is played by athletes with a physical or with an intellectual disability spread over 11 classes:
Classes 1-5: Athletes competing from a wheelchair, with Class 1
being the most severely impaired and Class 5 the least impaired.
Classes 6 -10: Ambulant athletes with Class 6 the most severely
impaired and Class 10 the least.
Class 11: Athletes with an intellectual disability – although this category was suspended for the Athens 2004 and Beijing 2008 Games.
Volleyball (Sitting) Sitting Volleyball is contested by athletes who must simply meetminimal eligibility criteria that prevent them from competing with Olympic athletes.
Wheelchair Basketball is open to athletes using wheelchairs whose impairments may include paraplegia, lower limb amputations, cerebral palsy and polio.
Athletes are classified according to their physical ability and are given a points rating between 1.0 – 4.5: ‘one pointers’ being the most severely impaired and 4.5 the least impaired. Each team fields five players but may not exceed a total of 14 points at any given time.
All athletes in the sport of Wheelchair Fencing must use a wheelchair and the sport is open to those with spinal cord injuries, lower limb amputations, cerebral palsy and other forms of disability. Competition is split into two categories:
Class A: Athletes with good balance and recovery and full trunk movement.
Class B: Athletes with poor balance and recovery but full use of one or both upper limbs.
Athletes are classified on a points system similar to Wheelchair Basketball, with the most severely disabled athlete being graded at 0.5 points rising to 3.5 points for the more able.
Each team is comprised of four players and is allowed a maximum of eight points in action on court at any one time.
Wheelchair Tennis is played from a wheelchair with two classes – open and quad (impairment in all four limbs).
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Posted: Friday, August 31, 2012 8:43 am
Updated: 2:19 pm, Fri Aug 31, 2012.
Special needs student left on school bus for hours
Omaha Public Schools officials are investigating after a special needs student was left on a bus for hours.
Omaha Public Schools officials are investigating after a special needs student was left on a bus for hours.
Omaha television station KETV reports (http://bit.ly/NB9pey) that the school bus picked up the 13-year-old girl, who has cerebral palsy and autism, around 7 a.m. Thursday. But the girl did not get off the bus at Bryan Middle School as she was supposed to.
Omaha television station KETV reports (http://bit.ly/NB9pey) that the school bus picked up the 13-year-old girl, who has cerebral palsy and autism, around 7 a.m. Thursday. But the girl did not get off the bus at Bryan Middle School as she was supposed to.
Officials say the bus driver did not look to see that the girl got off the bus at school _ a violation of district policy.
The girl spent another three hours on the bus until the driver realized she was still on board.
District spokesman Dave Patton says the bus driver is now on administrative leave and could be fired.
Information from: KETV-TV, http://www.ketv.com
© 2012 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
Friday, August 31, 2012 8:43 am.
Updated: 2:19 pm.
Office has a large number of resources and a caring staff
By Donna Russell
The Disability Services Office at North Lake College provides a variety of support services to assist students with special needs.
Professionals in the DSO area are committed to developing a student’s full potential and ability.
The department offers individual academic advisement, helps with registration, and approves and implements academic accommodations based on a student’s disability.
DSO can also act as a referral source if a student needs additional support.
“DSO cares about the student,” said Elizabeth Tompkins, a current employee in the DSO/Veterans Affairs office at NLC. Tompkins, who has cerebral palsy, was a recipient of DSO services when she attended North Lake College as a student. She said she is happy to be part of such a caring helpful department.
To be eligible for services, a student must be enrolled at North Lake College and have a diagnosed disability (physical, psychological, learning, etc.) The student must then provide documentation of the disability. After verification, DSO counselors will certify eligibility for services and determine which accommodations are necessary and appropriate. All student records are confidential as required by applicable laws.
Some of the many resources available through DSO include assistive technology, such as: Kurzweil Readers, Zoom Text, Dragon Naturally Speaking, Taped or Digital Textbooks for the Blind/Dyslexic, CCTV-print magnification device for the visually impaired, TTY-telecommunication device for the Deaf, FM System-assistive hearing, equipment for the hearing impaired, and JAWS.
Classroom interpreters and/or CART (Real-Time Captioning) for the deaf or for students who are hard of hearing are also available.
NLC student Cynthia Mouton said, “DSO helped make the process of attending school easier.” She said the department provided counseling, ramps for her wheelchair, and made her aware of other resources that were available.
Mouton added that DSO continues to address needs of students in wheelchairs. Overall, she feels her experience with DSO has been positive and helpful.
Caring staff in DSO at North Lake College, such as Rehabilitation Counselor Tracy Hunter-Lee, are committed to empowering students with disabilities.
“Our goal is to foster independence and help students achieve realistic career and educational goals,” she said.
For further information or assistance, call DSO at 972-273-3165, or visit A-430 to schedule an appointment.
- Joanne Robinson and Ann Leach assaulted and starved defenceless residents of a care home in Farnsworth, near Bolton, for two years
- They strapped victims to wheelchairs and kicked them while shouting abuse
- Colleagues were intimidated into staying silent about abuse
- Robinson and Leach sentenced to 15 and 21 months respectively today
- Judge says abused victims were as ‘vulnerable as new born babies’
13:46 EST, 5 July 2012
14:22 EST, 5 July 2012
Two carers nicknamed ‘the matrons from hell’ were jailed today after they subjected disabled care home residents to a series of abuses.
Joanne Robinson, 47, and Ann Leach, 48, assaulted, starved and humiliated two defenceless residents for almost two years while scared colleagues said nothing at a home in Farnsworth, near Bolton.
One of their victims, a 44-year-old woman who couldn’t speak and was virtually blind, was strapped to a wheelchair as ‘punishment’ and locked inside her bedroom as she sobbed and screamed.
Ann Leach, left in blue coat, and Joanna Robinson, right, were sentenced at Manchester Crown Court today
The women would mock the victim,
saying ‘get her in the chair’ and calling her an ‘ugly b****’. On other
occasions they threw a jug of cold water at her and sprayed air
freshener in her face.
and Leach refused to let the residents eat at their normal pace
and would throw their dinner in the bin. At one point the abused woman
weighed just seven-and-a-half stone.
One fellow care worker told how
Robinson kicked the woman after she collapsed on the floor, shouting:
‘Get up you f****** b****.
resident, a 39-year-old man with severe cerebral palsy who had suffered
a stroke, was hit on the back of the head forcing him forward as he
watched TV. When asked why she hit him, Leach had said: ‘He gets on my
When a colleague
did confront Leach, she said: ‘You don’t want to cross me,’ while
Robinson added: ‘She knows some very bad people.’
Ann Leach arriving at a previous appearance during the trial, where witnesses detailed a litany of abuses
Both women were eventually suspended in October 2010 after several carers came forward to testify against them.
the three residents of the care home, two were men in wheelchairs. The other, the woman, suffered from a rare genetic disorder called Cri du Chat
syndrome which leaves her virtually blind, incontinent and prone to
Former colleague Linda Millington, who testified against the women, said she was ‘frightened’ to report what she had seen.
Another colleague, Donna Joyce, said: ‘We don’t
lock people up but they would take hold of her upper arms and quickly
get her into the room and shut the door.
‘There is no need to use
that much force. The towels were on the door practically every day. You
could hear her banging her head against the wall and hear her crying and
shouting out but mainly you could hear her banging her head against the
wall or her wardrobe or the back of the door.’
Miss Joyce said Leach also attempted to silence the
man when he became distressed after a bath by wrapping a towel across
his face then pulling it tight at the back of his head.
Piggott Street, Farnworth and Robinson of Bolton Road, Kearsley denied
any wronging. Leach claimed she was the victim of a “culture of
bitchiness” and claimed one of her former work colleagues had made a
lesbian pass at her.
She also tried to excuse her
cruelty by saying she suffered from Pre-menstrual syndrome. Both have since been sacked
At Manchester Crown Court today Robinson was jailed
for 15 months and mother-of-three Leach was given 21 months.
unanimously found guilty of several counts of ill-treatment of a person
without capacity after a 16-day trial.
The care home on Worsley Road Farnsworth, Bolton where Ann Leach and Joanne Robinson abused residents
Judge Robert Atherton, said: ‘These residents were as vulnerable as
new born babies and they depended on people caring for them.
betrayed those who you were supposed to be looking after.’
the case the 44-year-old disabled woman’s mother, 67, said: ‘We have
been going through this for 18 long months, waiting for the trial and it
has been absolutely horrendous.
‘The council promised the earth when
she moved there but to put her in care was horrendous.
At the time my
daughter was always so upset and whenever we visited she wanted to come
‘We thought it was because she wanted to come home. She lost three stone in three years and something was definitely wrong. I will always regret having put her there.’
Council’s Director of Adult Services, John Rutherford, said: ‘We will
carry out a full internal review of the circumstances and detail
relating to the specifics of this case to establish if any lessons can
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Burglars hit a prominent DeKalb County charity that helps thousands of developmentally disabled children and their families early Friday morning.
The executive director of FOCUS (Families of Children Under Stress) told Channel 2’s Tom Regan the thieves ransacked the organization’s offices and stole more than $7,000 worth of computers and related equipment.
“It’s just sad that our children’s program will be interrupted. We will get through it,” said Lucy Cusick.
Cusick walked Regan through the mess in the offices off Presidential Parkway near Interstate 285 in DeKalb County. In all, 10 computers were stolen, along with 17 monitors. Cash and cleaning supplies were also taken.
“They even took the Cokes out of the refrigerator,” said Cusick.
FOCUS supports families through a variety of events and activities for children with special needs. On Saturday, the group is heading to Camp Twin Lakes for an weeklong visit.
James Seidel, a 16-year-old with cerebral palsy said he’s saddened that someone would resort to stealing from a charity.
“I think it’s just a terrible thing. It’s really a darn shame. FOCUS uses their technology to communicate with its families, and you know there’s a camp coming up this weekend. It’s a real shame people would do that,” said Seidel.
The charity believes the thieves got into the office by slipping a hook through a mail slot and popping open the locks. The executive director said she hopes insurance will replace most of the stolen computers. The organization would like to install an alarm system but right now, it’s not in the budget.
Cusick said she can’t understand why someone would steal from an organization whose mission is to help children with life-long disabilities.
“It’s mean, desperate. I know times are tough. What they are going to get for these computers, we need them a lot more,” said Cusick.
Kathy Marshall is the first “special”parent that I connected with. Her son John and my son Matthew were in the kindergarten together in a special day class. John, I learned, had cerebral palsy. Kathy had a bemused smile on her face when she told me this. I wondered what that was all about, but it made me feel less anxious about my situation. Matthew was described as pervasively developmentally delayed, a phrase that I took literally, and I was in the process of helping him catch up, hopeful that this would be the only year that he’d need special education.
I was struck by how comfortable Kathy seemed in a room full of 5 and 6 year olds with developmental disabilities.She chased after her mischieveious son John cheerfully when he bolted away with a handful of cookies, maintaining an upbeat conversation the entire time. Seeing this woman looking positive and engaged rather than downbeat and bedraggled gave me hope. Looking back, I think meeting her was my first “Aha” moment special-mom-style. I was going to be OK.
Kathy doesn’t know this, but she was the role model that I needed to get me on the path toward acceptance. I’d like to pass the lessons that she taught me by example on to you:
HOW TO BE A SPECIAL NEEDS PARENT
- Offer words of encouragement to new special parents—Not “God will only give you as much as you can handle” or “The limit of human endurance has yet to be reached.” They’ll hear that plenty down the road.“ Try “You seem like a great parent. I know you’re overwhelmed but once you find helpers, and a circle of support, things will improve. I have some names right here…”
- Teach others how to relate to your child by showing them how you do it–Gracefully and with love.
- Share resources freely. Pull names and phone numbers out of your head, or from scraps of paper in your purse, your pocket, or your smart phone.
- Treat your helpers and circle of support really really well, because they are your lifeline and your family.
- Venting is good, and whining is bad. Period.
- Stay connected to parents of special kids, even when your children go in different directions.
- Admit it when you are going through a particularly difficult phase with your child, and ask for help. Brainstorming is good. Special parents like to share their expertise.
- After a good venting/brainstorming session, take a deep breath and remember how hard it is to be your child. Give them the admiration they deserve.
- If venting and brainstorming are not enough, seek guidance from a professional-one of your special parent friends might have a good referral that they can scribble on the back of a gum wrapper.
Kathy’s son John passed away unexpectedly last week, most likely from a seizure in his sleep. All who knew him and who know his wonderful parents are devastated. John was only 24 years old. One of the first things Kathy told me after she told me the news was “I hope Matthew still calls me!”
He will, Kathy. Thank you for talking with him. And thank you for teaching me how to be a special mom.
John attended a wonderful day program– RES/SUCESS–that I wrote about a while back. If you have a special needs child, I suggest you learn more about programs like RES. I think it is smart to support such programs so that they will be ready when your child needs them! Your regional center should be able to help you identify which programs fit your adult child’s needs.
Got questions? Need resources? Email me at firstname.lastname@example.org and I will do my very best to help.
KALAMAZOO, MI — Angela Wanger enrolled her daughter, Raven, in a weeklong camp near the family’s hometown of Mason only to be told halfway through that she couldn’t come back.
The request was made because of Raven’s numerous physical disabilities, Wanger said.
“She couldn’t come back because another parent said she was embarrassed to have her child there with Raven,” Wanger said. “Needless to say, Raven did go back and she finished out the week.”
The search for an inclusive and non-judgmental camping experience lead mom and daughter two years ago to the Girl Scouts Heart of Michigan where Raven was able to attend resident camps at Camp Merrie Woode in Plainwell as well as daycamps at the organization’s Program and Training Center in Kalamazoo. More than three fourths of the space in the 27,000-square-foot building is used by girls and adult volunteers for programs, camps and meetings.
“It’s hard to find camps to take individuals with disabilities, especially with the amount that she has,” Wanger said of her daughter, “but the Girl Scouts have been great.”
Raven, who was born with cerebral palsy and has severe breathing problems, said attending the camps is worth the three hour roundtrip commute from her home in Mason to the Kalamazoo area.
“For her to drive 1 ½ hours everyday both ways shows how much she wants to be involved,” said Jenn “Patch” Cook, PATC Day Camp director.
With the help of her caregiver, Chantelle Gillette, Raven and her wheelchair are loaded into a van for the drive to a place where she is able to be “one of the girls.”
Being the only camper in a wheelchair is no big deal, she says.
“Some of the younger girls ask me why I’m in a wheelchair and I tell them I was born that way and that these are my wheels,” Raven said. “I feel like a role model because the other kids learn about my condition and see that I don’t let my disabilities stop me.”
About 49 percent of resident camps and 46 percent of day camps which belong to the American Camp Association offer specialized camps for individuals with health issues such as diabetes, autism and Downs Syndrome, said Theresa Walker,executive director of ACA’s Michigan Field Office. GSHOM’s eight camp properties are all ACA members.
“I’m not sure if the need for these types of camps is increasing,” Walker said. “It might be that more of these camps are available for kids with disabilities. A lot of these camps have been around for a long time.”
However, GSHOM camps don’t separate out girls with disabilities, said Jan Barker, chief executive officer of GSHOM.
“Our organization has always been one of inclusiveness where all girls regardless of their individual circumstances will find a place unlike any other where they are encouraged to be themselves and try new things,” Barker said. “Our commitment is to each and every girl who chooses us to partner with on their journey to adulthood.”
Raven’s ties to Girl Scouts began when she was in fourth grade. Now a Senior Ambassador, she said she is looking forward to earning her Girl Scout Gold Award, the highest award given by the organization, and going to college.
“I like Girl Scouts because of what they do in their communities and for how they help out girls,” Raven said during lunch on a recent Thursday at the PATC where she was attending a weeklong CSI-themed camp.
Gillette said Raven has the will and the determination to participate as much as she can in activities which include playing outside, working on art projects and studying science.
“Being able to come here and be gathered with the girls is good for her,” Gillette said. “Most all the girls have taken to her and help her out pretty well.”
“There’s no hesitation. She makes friends right away,” Cook said. “She blazes in and becomes the center of attention on her own.”
This is due in large part to Raven’s no-holds-barred approach.
“She’s been on a horseback riding trip and kind of does it all,” Cook said. Our Girl Scout activities are for every girl and we do all we can to make that happen.”
Having access to these types of opportunities is vital to Raven’s continued growth and success, Wanger said.
“It means that she is growing as an individual and she is not looked upon as somebody different,” Wanger said.
Below is a list of the remaining summer camps which still have spaces available. Contact GSHOM at 800-497-2688 or logon to the website at www.gshom.org for more information.
July 29- Aug 3
Camp Merrie Woode:
Rookie Riders (entering grades 6-8)
Pasture Pals (entering grades 4-5)
CIT (Counselor in Training) (entering grades 11-12)
Water Lilies (entering grades 2-3)
Camp Merrie Woode
Back in the Saddle (entering grades 4-5)
Camp Kaleidoscope (entering grades 6-8)
Bonafide Brownies (entering grades 23)
PATC Day Camp
July 30 – Aug 3
Summer Olympics (entering grades K-5)
Raise the Roof ( entering grades 6-12)
Fashionista (girls entering K-5)
Wacky Water (entering grades K-5)
Science Sensations (entering grades K-5)
Great Graphics ( entering grades 6-12)
August 27 – 31
Carnival (entering grades K-5)
VIRGINIA BEACH, Va. (WAVY) – Someone stole a tricycle from a little girl who really needs it.
Twelve-year-old Melanie has cerebral palsy. The bike was customized to fit her needs. It was taken from her home in Virginia Beach Friday night.
“She’s very sweet,” said Melanie’s mother, who asked WAVY.com not to publish her name. “She loved to ride the bicycle.”
Melanie’s mom showed WAVY.com pictures of Melanie riding around Mount Trashmore and down the boardwalk at the Oceanfront. She says it is one of Melanie’s favorite outdoor activities.
But like Melanie, this set of wheels is a little bit different. For one thing, there are three wheels instead of two.
“What it does is it stands up so she doesn’t fall over, because she struggles with balance,” said neighbor Jessica Cenobio. “It folds up for storage because it’s a bigger bike than regular ones.”
The tricycle fit all of Melanie’s special needs. Cerebral palsy limits her speech, mobility and balance. Mom saved $300 to make sure she could ride with the rest of the kids.
“It’s very hard to have a child with special needs,” said her mother. “To live everyday and try to make it normal.”
Friday night she discovered Melanie’s bike was no longer next to the porch in their gated backyard. Someone had taken it.
“I feel so angry, so mad, you know,” said Melanie’s mother. “I want to see the people who stole the bike and say ‘Why did you do it? Why didn’t you come over and ask me, if you need $5?’ I can do it. Don’t come take my daughter’s bike.”
As for Melanie, she is making the best of it. But her mother can’t help but hope the tricycle will reappear in the same spot she left it, ready for another ride.
“In the summertime she loved to ride the bicycle,” she said.
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