Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

Sullivan family of Marlette face drastic cuts to state aid to care for paraplegic son injured in MSU lightning strike

Patti's Comments: I am going to keep posting this as a protest until this matter is resolved for John and his family!

Excerpt from mlive.com: (click for entire article)

John Sullivan hasn't walked, talked, fed, bathed or clothed himself in 24 years -- since the day he was struck by lightning during a high school golf tournament at the age of 17.

Every day since, Richard Sullivan has slept in a recliner at his son's bedside, alert to the slightest noise that might mean John needs help.

"I always worry about him choking even though he has an excellent gag reflex," said Richard Sullivan, 65. "I don't think I could sleep in a bed anymore. It's amazing what you can get used to."

Every morning, the retired dairy farmer uses a system of slings and hoists to move his 6-feet 4-inch, 185-pound son from the bed to a wheelchair to a whirlpool tub and back again.

More hours are spent changing the layers of bed pads and sheets, then dressing John and feeding him through a stomach tube.

Throughout the day, Sullivan repositions his son regularly to avoid pressure sores. In 24 years, John Sullivan has never had a bed sore.

After nearly 20 years of jumping through legal hoops, the Sullivans won full compensation for John's 24-hour care in 2006.

Now the family is headed back to court again, after the state Department of Human Services notified them on Aug. 31 that compensation for John's care -- called "chore services" -- will be cut back to 168.5 hours per month, at the rate of $7.50 an hour.

That means the family stands to lose about 75 percent of its income, unless they can convince a judge otherwise.

The following links have background information on this case:

Ruling won't force in-home Medicaid

Medicaid Does Not Have To Fund In-Home Services, Judge Rules

John Sullivan Update

Patti's Comments: I am going to keep posting this as a protest until this matter is resolved for John and his family!

Excerpt from mlive.com: (click for entire article)

John Sullivan hasn't walked, talked, fed, bathed or clothed himself in 24 years -- since the day he was struck by lightning during a high school golf tournament at the age of 17.

Every day since, Richard Sullivan has slept in a recliner at his son's bedside, alert to the slightest noise that might mean John needs help.

"I always worry about him choking even though he has an excellent gag reflex," said Richard Sullivan, 65. "I don't think I could sleep in a bed anymore. It's amazing what you can get used to."

Every morning, the retired dairy farmer uses a system of slings and hoists to move his 6-feet 4-inch, 185-pound son from the bed to a wheelchair to a whirlpool tub and back again.

More hours are spent changing the layers of bed pads and sheets, then dressing John and feeding him through a stomach tube.

Throughout the day, Sullivan repositions his son regularly to avoid pressure sores. In 24 years, John Sullivan has never had a bed sore.

After nearly 20 years of jumping through legal hoops, the Sullivans won full compensation for John's 24-hour care in 2006.

Now the family is headed back to court again, after the state Department of Human Services notified them on Aug. 31 that compensation for John's care -- called "chore services" -- will be cut back to 168.5 hours per month, at the rate of $7.50 an hour.

That means the family stands to lose about 75 percent of its income, unless they can convince a judge otherwise.

The following links have background information on this case:

Ruling won't force in-home Medicaid

Medicaid Does Not Have To Fund In-Home Services, Judge Rules

John Sullivan Update

Patti's Comments: I am going to keep posting this as a protest until this matter is resolved for John and his family!

Excerpt from mlive.com: (click for entire article)

John Sullivan hasn't walked, talked, fed, bathed or clothed himself in 24 years -- since the day he was struck by lightning during a high school golf tournament at the age of 17.

Every day since, Richard Sullivan has slept in a recliner at his son's bedside, alert to the slightest noise that might mean John needs help.

"I always worry about him choking even though he has an excellent gag reflex," said Richard Sullivan, 65. "I don't think I could sleep in a bed anymore. It's amazing what you can get used to."

Every morning, the retired dairy farmer uses a system of slings and hoists to move his 6-feet 4-inch, 185-pound son from the bed to a wheelchair to a whirlpool tub and back again.

More hours are spent changing the layers of bed pads and sheets, then dressing John and feeding him through a stomach tube.

Throughout the day, Sullivan repositions his son regularly to avoid pressure sores. In 24 years, John Sullivan has never had a bed sore.

After nearly 20 years of jumping through legal hoops, the Sullivans won full compensation for John's 24-hour care in 2006.

Now the family is headed back to court again, after the state Department of Human Services notified them on Aug. 31 that compensation for John's care -- called "chore services" -- will be cut back to 168.5 hours per month, at the rate of $7.50 an hour.

That means the family stands to lose about 75 percent of its income, unless they can convince a judge otherwise.

The following links have background information on this case:

Ruling won't force in-home Medicaid

Medicaid Does Not Have To Fund In-Home Services, Judge Rules

John Sullivan Update

20 Movie Icons You Didn’t Know Were in the Military

Excerpt from Film School Rejects: (click for entire article)

I’d be willing to bet that you didn’t know Bela Lugosi was actually Lt. Lugosi of the Austro-Hungarian Army. He’s just one of many Hollywood legends who served in the military, and on this Memorial Day, I think it’s fitting that we take a look at 20 movie icons that you might not have realized had careers in the Air Force, Army, Navy, or Marines.

A few of these names won’t be all that surprising, but most will make you look twice. Some of them had illustrious careers in horror, others as dancers, still others as directors and producers. Comedy, drama, westerns, war movies (oddly enough), science fiction, and romance – all major genres are represented here. The bond that these men (and one woman) shared was that before (or during) their stellar careers on the silver screen, they strapped on a uniform and reported for duty.

Real support for vets: Veterans Affairs Health Information Technology Initiative winners

Excerpt from The Huffington Post: (click for entire article)

Okay, the deal is that in any large organization, it's the rank and file, the front line workers, who know what's going on and how to do better.

The Department of Veterans Affairs has just announced the winners of the second innovation initiative, the focus being on real, common sense ways to better support vets.  Here's a very partial list, and I'll later try to focus later on a few that make a lot of sense to me.

· Reducing health care associated infections using informatics

· CPRS-based automated queries & reports

· Robust VA forms search engine

Losing a son to autism: A father’s grief

Excerpt from Lost and Tired: (click for entire article)

I hate autism. I hate everything about it. My kids are not autism. I hate autism for doing to them, to us what it has done. Autism is a thief. It’s a coward. It sneaks in and steals our kids right out from under us. Autism is a cruel and unforgiving disorder. It takes relentlessly and never stops.

My Story

I hate hearing how it could be worse. What is it like to have autism in our lives? As a father, I don’t know if I even have the words to describe what it’s like. I’m sorry if I offend anyone with this but it is what it is. Gavin is our 10 year old son. He died at age 3. That’s what it’s like for me. He has a rare, regressive form of autism. Sometime after his 3rd birthday a switch flipped and the Gavin we knew and loved was gone. I really mean that. The child that was, no longer existed. What remains is a shell of who he was.

Kerry backs president on handling of Gulf spill

Excerpt from Boston.com: (click for entire article)

Senator John Kerry yesterday aggressively defended President Obama’s handling of the oil spill in the Gulf of Mexico, arguing that criticism of the president is “ridiculous’’ and adding that the environmental disaster illustrated the need to act on the Massachusetts Democrat’s comprehensive climate change bill.

That legislation includes a provision for the possible expansion of offshore drilling, part of a political bargain Kerry hopes will gain support for passage.

“From day one, this administration has had its top personnel all over this issue. They don’t drill wells, companies do. And the oil companies are the people who are supposed to have the technology to shut it down,’’ Kerry said at a breakfast sponsored by the Christian Science Monitor.

No one is more of a true hero than Christopher Reeve

Excerpt from Christopher and Dana Reeve Foundation: (click for entire article)

One man, who for the last decade of his life was a ventilator-dependent quadriplegic, led an international movement to help those living with paralysis. He epitomized the words "nothing is impossible."

Today, through the Reeve Foundation's persistence and promise, neuroscientists around the world agree that repairing the damaged spinal cord is not a question of if, but a question of when.

On May 27, 1995, Christopher Reeve was paralyzed from a spinal cord injury so severe that his first lucid thought was that possibly it would be better for everybody else if he were to die.  Not only did Christopher choose to live, he chose to fight. “I felt I needed to do something,” he said, “not just for myself, but for everyone else in the same condition.

Passing the Advocacy Baton

Excerpt from Terri's Special Children Blog: (click for entire article)

Does advocacy have an "off" switch?

If it does, I need to find it, because my daughter is going to college next fall and everyone tells me she's going to have to be her own advocate. No more conferencing with teachers and networking with staff and negotiating accommodations for you, Mom! No more IEPs or packets of information for professors. Time for the girl to grow up and do it for herself.

Well, okay. Can't say I'll miss those IEP showdowns. It's nice to think that at the stroke of age 18 or at the hand-off of a diploma, a young person who's needed intensive intervention and coordination between home and school will suddenly get hit by the advocacy stick and be able to speak up for herself. Hey, that language disability that's kept her tongue-tied and timid since childhood? No problem! Speak on up, hon.

Estimates of oil leak gush past twice the previous levels; drill permits yanked

Excerpt from The Washington Post: (click for entire article)

With mud continuing to battle oil in an attempted "top kill" of the leaking well at the bottom of the Gulf of Mexico, the historic scale of the disaster became clearer Thursday when scientists said the mile-deep well has been spewing 12,000 to 19,000 barrels of oil a day, far more than previously estimated.

The new figure supports what many observers have assumed from the images of oil slicking the gulf surface, slathering beaches and spurting from a pipe on the sea floor: This is the worst oil spill in U.S. history.

Many museums are offering free admission to active duty personnel and their families from Memorial Day thru Labor Day

Excerpt from NEA Initiatives: (click for entire article)

Blue Star Museums is a partnership among Blue Star Families, the National Endowment for the Arts, and more than 700 museums in all 50 states to offer free admission to active duty military personnel and their families from Memorial Day, May 31, 2010, through Labor Day, September 6, 2010.

•  If you are active duty military personnel and/or an immediate family member, all you need to do is show either a Geneva Conventions CAC Card, a DD Form 1173, or a DD Form 1173-1 at the museum admissions desk. Immediate family members under the age of 10 must be accompanied by an appropriate ID holder.

We hope you and your family will explore as many museums as possible this summer. Find the participating museums nearest you by clicking on the state abbreviation on the map below and tell us about your experience on the Blue Star Museums Blog.

New book discusses disability hate crimes

Excerpt from Media dis&dat: (click for entire article)

Disability hate crimes are a global problem. They are often violent and hyper-aggressive, with life-changing effects on victims, and they send consistent messages of intolerance and bigotry. This ground-breaking book shows that disability hate crimes do exist, that they have unique characteristics which distinguish them from other hate crimes, and that more effective policies and practices can and must be developed to respond and prevent them.

With particular focus on the UK and USA's contrasting response to this issue, this book will help readers to define hate crimes as well as place them within their wider social context. It discusses the need for legislative recognition and essential improvements on the reporting of incidents and assistance for individual victims of these crimes, as well as the need to address the social exclusion of disabled people and the negative attitudes surrounding their condition.