In 2009, the “estimated economic value” of the unpaid contributions of family caregivers was a staggering $450 billion according to Valuing the Invaluable: 2011 Update, The Growing Contributions and Costs of Family Caregiving, a recent report from the AARP Public Policy Institute. This $450 billion figure represents a 20% increase over 2007’s $375 billion estimate. Reasons for this increase include:

• 23% rise in the number of caregivers
• 9% increase in the number of hours spent on care
• $1-per-hour hike in the “wage” used to determine the value unpaid caregivers deliver

“Unpaid family caregivers are shouldering a majority of the burden of long-term-care in the U.S,” Tergesen concludes. With caregiver stress and even burnout being common concerns. Caregivers’ fatigue can cause serious patient safety concerns. What can be done to help families? Here are 3 ways you can help a family caregiver you know:

• Organization! This is the one the best ways to most successfully mobilize the support that every family caregiver should have. Call a family meeting, set up and manage a schedule that everybody has access to. People are willing to pitch in, but it’s easier to commit if it is clear what they are committing to (and how often).
• Communication! Family caregivers should have a means of remaining in communicationbecause, of course, this benefits the care recipient, but open communication promotes an environment in which family caregivers can be honest about how they’re feeling (mentally, physically, emotionally and otherwise). Remember: if the care recipient is completely reliant on the family caregivers, it is imperative that the family caregivers are well.
• Break! One of the greatest benefits of mobilizing a “team” of family caregivers who can pitch in is the ability to take a break when necessary. Take whatever time you can for yourself to reduce the risk of illness and burnout.

CRI is always there to give the family caregivers their much-needed break. Don't hestitate to contact CRI for more information today call 814-838-7222 or visit www.crinet.org for more information.  Help is just around the corner.  Call today!

An interesting Doggie Twist on Disability

If your dog has become injured or is experiencing a disability that affects his ability to walk, Eddie's Wheels has the answer.

Eddie Grinnell, owner of Eddie's Wheels, is a mechanical engineer by trade. After his companion Doberman, Buddha, was injured and became partially paralyzed in 1989, Grinnell (finding no other help available) invented his first attachable cart for his dog. Since then, Eddie's Wheel's has grown to manufacture carts, harnesses, and wheelchairs for dogs, which are used worldwide.

I had the opportunity to meet a few of Eddie Grinnell's dogs at his home in Shelburne, MA, all of whom have paralysis or loss of either their front or hind legs – and all of whom were energetic, healthy, and happy to trot around with their carts attached. Eddie and his wife Leslie, who has been working with disabled dogs for over 20 years, explained the modifications you might need in your home to accommodate a disabled dog.

Modifying Doorways for a Disabled Dog

"Everything we make will fit through a stand-sized door," said Eddie Grinnell. He added that even if the dog is very large, he modifies their standard design to be just narrow enough to fit through any door, so that you don't have to bring your dog in through the garage door. Even if you have raised thresholds or strips in your doorways, the dogs can go over them easily with the carts.

Naturally, just as you would for humans, you will want to have relatively clear paths for the dog. The dogs don't stay harnessed to the carts at all times, so you want to have a safe enclosed area for them when you are not home.

Setting Up Ramps for Disabled Dogs

Just like modifications for humans in wheelchairs, ramps of varying sizes can be built to accommodate your pet. Since the ramps are not attached to the dwelling, Eddie Grinnell said that you are not required to get a permit to build ramps for your pets.

According to Eddie Grinnell, there is a general formula to building ramps. If, for example, your steps have a 20 inch rise, you need to angle the ramp 1 inch per foot, creating a ramp that is 20 feet long. "Some dogs have really good upper-body strength and you might be able to get away with a ten-foot ramp," he said.

Eddie Grinnell said that a traction compound or strips of sandpaper that come with a sticky backing can be applied to the ramps to create better traction for the dogs.

If the dog only has minor difficulty walking, he recommended plastic or wooden steps (available at most large pet stores) to allow the pet to travel more easily around the house.

Managing Inclement Weather and Dogs on Wheels

Eddie Grinnell said that his carts are made to withstand wet weather and will not cause the dog any chafing. If you are dealing with snow, Leslie Grinnell said that they simply shovel the ramps and the dogs have no problem navigating a snowy surface. "We never use deicers. We don't put down salt; it'll hurt their pads. We just use sand," she said.

Dogs' Adjustment to Eddie's Wheels

Leslie Grinnell said that the carts allow the dog to "get back to a normal dog stance".

"If they can't walk, it's really easy. They just take off once you have the cart attached. If they can walk a little, then there may be a little more adjustment time," said Eddie Grinnell.

*** CRI does not provide services to animals! ***

Parents see hope after transplant denial outcry

A 3-year-old girl whose parents claimed she was denied a kidney transplant at one of the nation's top children's hospitals because of her mental disability is now being considered for the procedure, her father said Tuesday.

Joseph Rivera said he and his wife, Chrissy, met with doctors at Children's Hospital of Philadelphia on Friday and were told they are now willing to consider a transplant for their daughter, Amelia. The Stratford, N.J., family said doctors initially told them their daughter wasn't eligible for a transplant because of her quality of life and her mental condition.

"At this point, we're moving forward," Rivera said in an interview with The Associated Press. "They are allowing us at least to go through the process."

Rivera said his daughter will now have to go through screenings to see if she's a good transplant candidate. He and his wife will now be going in for tissue testing in March.

"We knew going in that it was a long process," Rivera said, adding that his daughter is a "healthy kid." ''She's doing great right now."

A hospital spokeswoman didn't immediately comment on the status of the case, which led to a public outcry after Chrissy Rivera wrote about it on her blog this month.

The hospital has said it "does not disqualify potential transplant candidates on the basis of intellectual abilities." It has also said it is "deeply committed" to providing the best possible medical care for all children, including those with disabilities.

Amelia Rivera, who goes by the nickname Mia, was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. She will need a transplant in six months to a year.

The issues over how doctors determine eligibility for kidney transplants are complex and there is no federally mandated policy on who can have a transplant and who can't, according to Dr. Robert S. Gaston, president of the American Society of Transplantation and medical director of the kidney transplant program at the University of Alabama at Birmingham.

Gaston said, however, that he had not heard of a cognitive deficit alone being considered as a factor in a transplant case. More often, the factors considered involve whether the patient has problems that would make surgery risky or whether they have a caregiver who will make sure that they take the needed medications.

"People who have a committed caregiver, a parent who is going to make sure they have the medications ... those produce the very best outcomes in kidney transplantations," he said.

Arthur Caplan, director of the University of Pennsylvania's Center for Bioethics, said transplant teams are often looking at candidates who have a broad array of problems — prone to seizures, distorted body, hearts or livers that are likely to fail. But sometimes, he said, parents only hear them say mental disability.

Caplan, who spoke generally and wasn't commenting specifically on the Rivera case, said he didn't think mental impairment should be a factor in determining whether a patient is a good transplant candidate unless it's an "enormously severe impairment" that results in a permanently unconscious or minimally conscious person.

Sentencing in NJ Neglect Case

A former caseworker and a private caretaker were sentenced Thursday to three years in prison for neglecting three women in a case that led to a state review of the conditions for developmentally disabled residents and calls for a new law.

Former caseworker Bridget Grimes and sponsor home provider Debra Sloan pleaded guilty last year, avoiding trials.

The 55-year-old Grimes had pleaded guilty to official misconduct, neglect of a disabled person and theft. Sloan had pleaded guilty to neglect of a disabled person and theft. Both were also charged initially with aggravated assault, but those charges were dropped in negotiated plea bargains.

The 57-year-old Sloan had a $51,000 per year contract to care for Erin Germaine, Tara O'Leary and Lydia Joy Perry in Hunterdon County's Alexandria Township.

The three women were removed in September 2008 after a relative of O'Leary's reported that the 28-year-old woman was dangerously thin and unwashed. O'Leary, a 4-foot-11 woman who had weighed 97 pounds the year before, was by then less than 50 pounds.

Germaine had also lost about half her body weight.

Both were hospitalized. Germaine recovered, but O'Leary died within months.

Authorities say Sloan made Perry serve as a caretaker of O'Leary. Perry died in 2009 at age 68.

Sloan spent money allocated for use for the women as if it were her own, authorities said.

Hunterdon County prosecutor Anthony Kearns said in a statement that developmentally disabled people are among the most vulnerable people in society. "It is our duty and obligation to ensure their protection," he said. "It is my hope that these convictions remind all who interact and serve this population to treat them with the utmost care and respect."

After the woman's conditions were made known, New Jersey's Department of Human Services ordered reviews of the conditions of more than 1,200 developmentally disabled adults living in private homes run by contractors with state contracts.

And lawmakers introduced a bill known as Tara's Law, designed to increase protections for developmentally disabled adults. The law hasn't been adopted.

At Thursday's sentencing hearings, relatives of the victims read statements about their loved ones and what happened to them.

Janet Fandel, Perry's niece, told the judge: "Most people treat their dogs better than the defendant treated my aunt."

Unkind job picture for people with disabilities

As unemployment ticked down again in January, new data shows that Americans with disabilities struggled to reap the benefits of an improving job market.

The U.S. Department of Labor reported Friday that unemployment among Americans with disabilities dropped to 12.9 percent in January, down from 13.5 percent at the end of last year.

However, the gains appear to be the result — at least in part — of fewer people with disabilities looking for work. In fact, the number of people within this group who were employed declined in January, as did the number considered part of the labor force, meaning that they were working or seeking a job.

Meanwhile, the labor market experienced unexpected growth, with the economy adding 243,000 jobs and unemployment among the general population dropping to 8.3 percent.

The Labor Department began tracking employment among people with disabilities in October 2008. There is not yet enough data compiled to establish seasonal trends among this population, so statistics for this group are not seasonally adjusted.

Data on people with disabilities covers those over the age of 16 who do not live in institutions. The first employment report specific to this population was made available in February 2009. Now, reports are released monthly.

White House Nationwide Disability Tour

Obama's administration officials are planning to fan out across the country starting this spring for a series of regional White House conferences to address disability issues.

In a conference call last week with leaders from several disability organizations, White House officials laid out preliminary plans for the events, according to those who participated in the call.

The regional meetings are expected to be held starting in mid-March, with some scheduled into the summer in:

Columbus, Ohio

Austin, Texas

• Los Angeles
• Denver
• Atlanta
• Boston
• Minneapolis
• Orlando, Fla
• Kansas City, Mo

Exact details on who from the administration will be hosting the conferences and precisely what will be on the agenda were not revealed to advocates.

“I think it’s about showing what they’ve accomplished and letting folks at the regional level know where they can go for resources,” said Chris Thomson, vice president of corporate affairs and general counsel at United Cerebral Palsy, who was on the call. “It’s a little unclear, but I definitely think it’s an opportunity for people to express their concerns.”

A White House spokesman declined to comment on the plans.

A judge has ordered a man to stand trial in the case of four mentally disabled adults found locked in a Philadelphia basement.

The Philadelphia Inquirer reported that Thursday's decision reverses an earlier ruling that dropped all charges against Eddie Wright.

The 51-year-old will now face trial on assault, kidnapping and related charges. Prosecutors said Wright played a role in a scam to imprison people and steal their government benefits.

In December, a different judge dismissed charges against Wright. He said testimony showed that Wright was also a victim of Linda Weston, who prosecutors said was the scheme's mastermind.

Weston and two others are being held for trial.

The Baby Boomer Generation Affects Accessibility

In 2011, the first baby boomers reached the traditional retirement age of 65.  By 2025, baby boomers will comprise about 25 percent of the total U.S. population. As this demographic ages, decisions concern them about their homes and their choice of lifestyle.

According to a 2003 AARP study, more than three quarters of respondents said it's important to have nonslip floor surfaces and bathroom aids such as grab bars or a bathing stool. But while 80 percent feel that bathroom aids are important, only about one third have them in their homes.

Recognizing a need in the market, bath companies are providing elegant and high-tech options for the elderly and/or disabled.

One of the things that people who are aging often have to sacrifice is that they can no longer enjoy a deep soak.  But the latest accessible bathtubs on the market allow the aging to bathe in a tub that's not only high-tech and safe, but includes elderly specific features to meet their needs.

An accessible bathtub needs more than just a few grab bars. These tubs usually incorporate a soaking tub style, built-in seat and walk-in door. This way, the bather doesn't need to risk losing balance by stepping over the high wall.

The typical walk-in bath has a hinged door that can be latched and unlatched. A new alternative is a rising wall bathtub, in which the entire outer wall of the bathtub raises and lowers easily. The extra-wide door opening allows a person to lift legs in and out of the bath and transition from a wheelchair.

Besides accessibility, bath manufacturers add other features that appeal to aging customers.

A concern that some people forget with walk-in tubs is the need for quick drainage.  We all area aware of the steps to getting a bath.  In order to get out of a walk-in bath, you have to open the door, but before you can do that, the water has to drain.  Think about how long it takes your bathtub at home to drain.  The average is probably somewhere along the line of 5-7 minutes in a typical tub.  That's quite a bit of time to sit in the water, but the quick draining feature eliminates water in under 2 minutes in a normal-sized tub.

To ease aches and pains, many accessible tubs offer jetted features that provide hydrotherapy benefits in everything from air jet systems to an invigorating jetted system to vibroacoustic technology, which is the use of sound to produce mechanical vibrations.

Its crucial for on to investigate the effectiveness of these features for various tubs before investing. Really look into the type of feature you want and research which tubs offer those.

A walk-in tub or rising wall bath can cost as much as $5,000. Some models might easily retrofit into an existing bath space, but hiring a professional to do the work will add cost. 

Those looking for a simple bathing experience might find that a low-threshold shower with a sturdy stool is all they need to get the job done. Otherwise, nonslip floors and grab bars provide some peace of mind for those who need to be extra careful stepping in and out of a bath.

Be sure to check out the Erie Reader on stands February 8th for an article highlighting the Bay City Thunder and Lightning Wheelchair Basketball team!

Seventeen teams competed in the 3^rd Annual RIM-AU Invitational Wheelchair Basketball Tournament on January 14-15, 2012, at the City of Southfield Beech Woods Recreation Center.  Thirteen teams competed in the Men’s Division III and 4 in the Junior Division.  With the exception of the teams from Grand Rapids who were only available for 2 games each, each DIII team played 5 games; the remaining Junior teams played 3-4 games each, with an opportunity to all play each other.   Each team completed a ballot for All Tournament Teams and Denver Branum MVP Awards, teams were not allowed to vote for players on their own teams.  Tournament ranking was determined according to win-loss record.  In the event of a tie, head-to-head comparison was considered; if teams played each other, then the total number of points scored across all games was compared.

Men’s Division III

Teams included:  Detroit Diehards, Bay City Thunder & Lightning, Cleveland Cavaliers, Chicago Fire, Wisconsin Thunder, Music City Lightning, Turnstone Bandits, Pittsburgh Steelwheelers, Grand Rapids Pacers, Motor City Firestorm, Forest City Flyers, Moraine Minutemen, and Kentwood Rollers.