"We All Have Our Challenges," young author says

A 22-year-old woman who was born with cerebral palsy and has advanced cancer has written a book being sold on Amazon and eBay that will inspire those who read it.
Liliya Bromberg’s dream “for several years was to write a book from her experiences that could give people a powerful perspective on life,” she wrote in response to email questions from a reporter because she cannot speak due to her disability.
Bromberg’s “We All Have Our Challenges: Bits of Wisdom,” sells for $8.89 on Amazon and Ryan G. Beale helped the Oak Park woman write the paperback. Beale was introduced to Bromberg by Bassie Shemtov of the Friendship Circle of West Bloomfield. The Michigan nonprofit provides services to those with disabilities.
One reviewer said her book is “a gift to us all” and it will “fill your soul with love, courage, and faith that transcends all boundaries.”
Bromberg, who is of Russian decent, said a main theme of her book is that “we ask g-d for help and our friends for support” in our lives.
“Life is about helping others and if we are not helping others than we have to rethink what kind of life we are living,” writes Bromberg, who receives services from the Macomb-Oakland Regional Center in terms of respite for her parents and help with dressing, eating and other daily activities.
Bromberg loves scrapbooking and listening to music and says her “most difficult challenge” is the lack of mobility and the cancer, “which is affecting me greatly.”
Bromberg has quadriplegic cerebral palsy, which means her legs and arms are paralyzed, and a rare form of cancer which destroys major organs. Part of the money from book sales will be donated to The Friendship Circle, Kids of Courage and cancer research.
She is an optimist and believes “the day will come when more people are open to embracing those with disabilities and it will be less effort to have a normal life.”
Since her cancer has weakened her body, Bromberg has had to turn down a trip to Disney World that was to begin June 10 and paid for by the Friendship Circle. Instead of a trip, Bromberg met Cinderella at her home on May 29 as a gift from “Kids of Courage,” said Beale.
“Life is a day to day process,” Bromberg writes. “I love friendship and I love going for strolls for fresh air. Faith to me is what keeps me alive and gives me hope.”
Jerry Wolffe is the Writer in Residence/Advocate at Large at Macomb-Oakland Regional Center. He can be reached at (586) 263-8950.

Bernstein: Use disabled to make Central Park safer to enter

Blind attorney Richard Bernstein has suggested to opposing lawyers in a lawsuit resulting from his being injured by a cyclist in New York’s Central Park that developmentally disabled people be used to help those with disabilities gain safe access to the park.

“Would you be willing to work with the National Jewish Council for Disabilities to have developmental disabled people be crossing guards” into the park? Bernstein said he proposed to lawyers for the city.

Bernstein, of Birmingham, spent 10 weeks in Mt. Sinai Medical Center in New York last summer and part of fall after he was struck Aug. 13 from behind by a cyclist while walking in the park. The collision shattered Bernstein’s pelvis.

He said “no part of Central Park is safe” to enter on foot for people with disabilities because “bikes don’t stop for lights.” Motor vehicles, however, must obey traffic signals regulating pedestrian entry to the park.

“The National Jewish organization wants the chance to have its consumers have jobs,” Bernstein said. “I presented the proposal to New York officials that intellectually challenged people can do a wonderful job as guides into the park.

“I hope (Mayor Michael) Bloomberg’s administration is willing to discuss this proposal.”

Jeffrey Lichtman, executive director of the National Jewish Council for Disabilities, said he would identify a number of development disabled adults who would be interesting in being crossing guards and cover the costs of their training.

“It would be good for them to have a job and they’d likely love it,” he said.

City of New York Law Department spokeswoman Elizabeth Thomas responded late Monday to Bernstein's proposal by saying: "We received a communication and will respond appropriately."

Bernstein filed the suit in U.S. District Court in Detroit to have New York police require bicyclists to stop at traffic signals at all access points to the park. The suit seeks no monetary damages for Bernstein.

In January, New York sought a change of venue to New York which Bernstein opposed. “They are seeking a change of venue to make this as difficult as possible for me to follow through on litigation.”

The lawsuit was being heard by federal judge Stephen J. Murphy III.

If New York goes for “my proposal to use developmentally disabled people as crossing guards, it would show everyone that cognitively impaired people have great value,” Bernstein said. “If New York agrees, “I’d freeze the lawsuit.”

Jerry Wolffe is the Disability Rights Advocate at Large/Writer in Residence at Macomb-Oakland Regional Center. He can be reached at 586 263-8950.

MORC helps those with disabilities find roommates

The Macomb-Oakland Regional Center is holding a "Meet and Greet" event from 4:30 p.m. to 6:30 p.m. on June 13 at the Auburn Hills office at 1270 Doris so consumers can find compatible roommates, said peer mentor coordinator Adam Fuhrman.
"We expect about 20 people." said Fuhrman, who has worked for four years for the nonprofit that provides services to 5,100 people with disabilities in Wayne, Oakland and Macomb counties.
Participants are "existing MORC consumers who are looking for a roommate," he said.
Criteria for a good match includes common interests, whether someone is a day or night person, is a smoker or non-smoker, is in a relationship or has a pet.
Family involvement also is a key component, Fuhrman said.
Those seeking roommates also are given a questionnaire which determines the lifestyles and interests of the perspective roommates.
After the first meeting, potential roommates meet for a second time where they get to know one another at a more in-depth level, said Fuhrman.
"Several people have found roommates during the past year as a result of this program," he added.
Generally, Fuhrman said "we have some-gendered individuals moving in together. We try to provide a structure and supports for people to successfully find a compatible roommate just like anyone else in security."

Don't get stuck in the "Why Me" Syndrome

I've heard 'Why Me?' so often after something bad happens to someone that I am almost deaf to it by now.
As a child, I gave in to Why Me a couple of times when I watched other boys in the neighborhood run off and leave me sitting on the green wooden steps of our flat or hopped out of a hospital bed to take a step and discovered the doctor's surgeries on my hips had destroyed my ability to lift me legs.
You can say why not me? Or, 'thank God that wasn't me ...' and fill in the blank. That's not nice, though.
You also can try to help someone caught in the self-pitying quicksand of Why Me.
The Why Me Syndrome gives the false, perhaps unconscious, notion that we, as humans, can control everything that occurs in our lives. Don't we wish.
Or we can control others, or their behavior, or the random events in nature like getting struck by lightning, a 1-in-3-million occurrence.
Instead, let's respond by saying: 'OK, that happened and what can I or we do about it' to adjust?
Being flexible and able to cope is a gift I've noticed successful able-bodied or disabled people just have as part of their being.
I fell going across the stage once at Osborn High School in an auditorium gathering and got up and said: "I'm in good company. President Franklin Roosevelt fell more than once and got up and kept on going."
One might not like the conservatism of Michigan's Gov. Rick Snyder but there is absolutely no doubt his mantra, Relentless Positive Action, is a darn good idea. That makes him a winner.
One learns when born with a disability as I was in the age before the pre-enlightenment that the best attitude in life is there is no such thing as "I can't" and there's nothing inside of me that will let me quit. That is a tough deal but it gets one past the barriers.
I admit, now that I am old, I have been cruel to others when it comes to their attitude.
As a 15-year-old with testosterone raging who just had major operations on both hips, I yelled at a girl who had a broken leg who refused to get out of her wheelchair and walk up a few wooden steps in physical therapy.
"Hell," I said, "What are you moaning about? In a few weeks you will be walking normally."
My words did silence her for a while but her mother did her a disservice by telling her that she didn't have to do it now if she didn't feel like doing it.
My parents wouldn't stand for that guff, nor would my sisters, nor would my friends who really knew that I never believed I had a disability that disabled me from doing.
Like the scene in "Field of Dreams," dad and I played catch on the cracked cement driveway of our home. I had the bad habit of always reaching out with my right hand to catch a pitch instead of crossing over with my left gloved hand to catch the ball properly.
Dad would throw to the right harder and harder and I'd still do it wrong, so much so that I built up blisters on my palm.
Eventually, I learned to catch the pitch properly and that led to me playing baseball with the kids in the neighborhood with my sister, Rene, and I inventing reasonable accommodation. Rene, as an accommodation, would run the bases for me when I batted.
Saying "Why Me?" also significantly diminishes self.
It's not what happens, it is how a person, corporation or nation reacts to an event.
This nation has to quit worrying about jobs being created overseas and put our heads together and create new industries of perhaps serving one another. The Macomb-Oakland Regional Center, where I now work as a rights advocate at large/writer in residence, has created thousands of jobs for folks during the past 30 years by getting the 13,000 disabled people out of state institutions and into group homes and having providers hire people to help those with disabilities who need it.
The 76 million baby boomers are going to need such a system, so let's get going on that.
So don't worry about fate or destiny having it in for you because you are in a Why Me situation.
Face the reality of the situation, change it to your advantage as best as you can and power forward.
It's like the time, at age 63, I finished the Detroit Freep Marathon on a handcycle in 4:06. I was pissed. I missed beating the four-hour mark. But I noticed my friends and family celebrated that I finished the 26.2-mile race and the time was of little consequence. Then, I realized (thanks Jeff Kuehn) I had accomplished something noteworthy.
So trash Why Me and believe in self, others and God and you'll never have to sit on the sidelines of life and watch the young boys run off to have fun.

Only half of special ed students graduate from high school

Education is the key to success in America for both the able-bodied and those with disabilities.

A good education in a field where there is demand means an individual has earning power and with money the things necessary to live a decent life are within reach.

But Michigan educators are failing those students with disabilities, according to a report released by The Department of Education. It showed a 51.9 percent high school graduation rate for the state's special education students despite having set a goal of 80 percent.

Other areas of needed improvement for special education students 3 to 21 years old are dropout rates, parent involvement and statewide assessment, the Gongwer Report said. Under federal law, a student with a disability can remain in the public education system to age 26. Often, however, for the most severely disabled students, the time in the classroom is spent listening to music, socializing and not really acquiring skills, even daily living skills, to make it on his or her own.

Seventy-two percent of special education students in 2011-12 showed adequate yearly growth, though the state target was 98 percent.

Also, 9.5 percent of special education students dropped out of high school in 2010-11, while the state target was 8 percent.

Finally, targets were met for facilitated parent involvement. The target for students between the ages of 3 to 5 was 35.5 percent, and 48 percent of parents reported that schools facilitated parent involvement. The target for students between the ages of six to 21 was 22 percent and 27.3 percent of parents reported schools facilitated parent involvement.

The report also showed the state met its target on 10-day suspensions or expulsions. The target was 4.5 percent or less and only 3.1 percent of special education students were expelled or suspended for more than 10 days in 2010-11.

'Gentle Teaching' helps mentally ill, disabled feel safe, valued

Just imagine what a wonderful world it would be if every person felt safe and valued. Maybe, there’d be no more war, sharing of resources and people feeling good about themselves.
John Williams, 53, of Royal Oak, travels throughout Oakland, Macomb, Wayne counties, and the entire state, using gentle teaching techniques on those with developmental disabilities and mental illness. In a majority of cases, the gentle teaching works, he says.
Williams is the executive director of Progressive Lifestyles Inc., a nonprofit in Waterford, which provides those trained in gentle teaching to help the disabled and mentally ill learn to build healthy relationships.
He also is one of the founders of the Center for Positive Living Supports, which is under contract with the state Department of Community Health to bring the “Culture of Gentleness” to those in need.
Williams has built on the techniques used on consumers of the Macomb-Oakland Regional Center by the late John McGee.
“We try to make people feel safe, valued and loved by interacting with them on a positive basis and often enough so that a relationship is built on praise, self-affirmation and touch,” Williams said.
Other concepts of gentle teaching include praise which can be through telling someone ‘thanks’ or ‘you did a good job’ or an encouraging pat on the back.
“We try to have the people we work with learn to trust us and we give them unconditional valuing,” he said.
Williams says a key element of gentle teaching is “lowering demands.”
“Oftentimes, caregivers and everyone in society are not aware of how demanding we are of others,” he said. “Instead of saying ‘how are you?’ when we see someone, we ask them if they picked up the mail, cleaned a room or emptied the dishwasher.
“We frequently place too many demands on people and not enough praise.”
Gentle teaching also includes creating structure “so that an individual knows what is expected of him or her. This creates less anxiety. We offer people in our (group) homes, for example, a choice of a bath or shower or a snack now or later. This empowers them.”
Williams also says life is full of transitions and the more information a person has about where they are going to live or work, the better it is.
“We make mini-plans to give people we work with information they need. We up the praise and lower expectations until the person is comfortable.
“This is how to build healthy relationships with your fellow man or woman.”
Jerry Wolffe is the Disability Rights Advocate at Large/Writer in Residence at the Macomb-Oakland Regional Center. He can be reached at 586-263-8950.

Why is Jerry Wolffe motivated to write Voices of Disabilities?

http://www.youtube.com/watch?v=pjM92Y-c4dchttp://www.youtube.com/watch?v=pjM92Y-c4dc

June is national Post-Traumatic Stress Disorder Awareness month

FYI: Veteran’s Affairs counselors can be reached at 800-273-8255.

Our nation will take the month of June to create greater awareness for a silent tormentor of men and women who survive combat, but came home broken in mind and spirit.

One in three servicemen and servicewomen returning from Afghanistan or other hot spots in the world today are being diagnosed with Post-Traumatic Stress Disorder, psychological experts say.

And, like military personnel of past generations, most don’t seek treatment. The latest studies report only 40 percent seek help. In addition, on average five active-duty troops attempt suicide each day.

Service providers such as the Macomb-Oakland Regional Center have workers trained in screening and assessment of PTSD and can recommend needed treatment.

Michigan currently has 680,000 veterans among its 9.8 million residents, Secretary of State Ruth Johnson said Wednesday

PTSD is an anxiety disorder that can develop after a person sees or experiences an event(s) that cause serious trauma or death. In addition to American troops, it can also impact children who have been abused as well as survivors of sexual assault, domestic violence, and natural disasters.

And unlike previous generations going back to the end of World War II in 1945, physicians are more able to recognize the disorder and military veterans are more apt to seek treatment.

PTSD can result in chronic sleep problems, irritability, anger, recurrent dreams about the event, intense reactions to reminders of the trauma, disturbances in relationships and isolation, psychiatrists at MORC say.

Some people with PTSD report symptoms of avoidance and emotional numbness.

Depending upon the case, recovery can take weeks to months to years or be a lifelong disability.

In order to help those with or suspected of having PTSD, the Department of Veterans Affairs has developed suggestions to help those with the disorder, including:

n  Learn as much as you can about PTSD.

n  Offer to go to doctor visits with your family member. You can help keep track of medicine and therapy and can be there for support.

n  Tell your loved one you are there to listen to him or her and understand if you he or she doesn’t feel like talking.

n  Plan family activities. Take a walk, go for a bike ride, or do some physical activity together and can help clear your mind.
n  Give loved ones space, but let them know you support them.

Jerry Wolffe is the Disability Advocate at Large/Writer in Residence at Macomb-Oakland Center. He can be reached at 586-263-8950.

MORC therapy restores health after biker hits mountain side

A 62-year-old retired teacher remembers lying unconscious with her body severely injured after losing consciousness while riding a motorcycle and crashing into a mountain at Medicine Wheel Passage near Lovell, Wyo., last July 4^th.

“I guess I passed out while riding my Harley from dehydration and altitude sickness,” said Marlene Mohan, a retired Utica teacher who occasionally subs in the classroom and lives in Sterling Heights.

“My husband was riding behind me. He said I drove off the side of the road, hit a sign and then the mountain,” Mohan said.

She suffered a broken pelvis and nose and had fractures to her ribs. The pain woke her up after a short time on the ground, she said.

But Mohan was lucky. The first car her husband, John, said came over the Rocky Mountain pass was driven by a doctor. The physician gave her emergency treatment to stabilize her vital functions and called EMS, she said.

“It took the emergency medical workers 45 minutes to get up there,” said Mohan who spent most of her career teaching at Bemis Junior High School in Macomb County.

After three days of being treated at North Big Horn Hospital in Lovell, Mahon and her husband flew back to Detroit.

“It was a very painful journey. It took 13 hours to get home, but everyone at Detroit Metro Airport was great.”

Mohan’s 2012 Harley was totaled. It was sent home a while after she started the road to recovery.

Mohan chose to have physical therapy at the rehab facility at the Macomb-Oakland Regional Center in Clinton Township. The facilities include traditional physical therapy equipment and a zero-entry pool where a recovering patient can learn again to bear weight.

 “I have probably got 90 percent (of my strength) back,” said Mohan after describing how she had six-and-a-half-months of physical therapy by aquatic and physical therapist at MORC, including physical therapist Jennifer Krieter and physical therapist assistants Janice Brackenbury and Vicki Helhowski.

“Everybody worked together,” she noted.

Mohan did therapy three days a week, twice a week in the pool and once in a normal p.t. room.

“I did my exercises at home as told to do,” she said. “That was the whole thing. I pushed through. They (therapists) encouraged me to work out at a gym and I did. There were days I really was ready to give up, but I am back in the saddle again, on my brand new Harley-Davidson.”

Jerry Wolffe is the Disability Rights Advocate at Large/Writer in Residence at MORC. He can be reached at 586 263 8950.

Rocking, Rollin' in Appreciation of Caregivers

The human spirit can’t be stifled, held behind bricks of a large institution, or restrained by a disability, not when there is hope and beauty in life.

It knows no bounds as was evidenced at the 2013 Macomb-Oakland Regional Center Caregiver Appreciation Day and Kohl’s Caregiver’s Fashion Show at the Palazzo Grande banquet hall in Shelby Township. Thursday’s event drew some 1,100 people from Southeastern Michigan to watch people with disabilities roll and stroll down a runway in $25,000 worth of the latest fashion clothes donated by Kohl’s.

Rodney Perry, 51, knows the lows of being disabled in America. Perry is a survivor. He was born with a disability, spent decades in state institutions for the mentally and physically disabled, but moved to his own place in 1987 and now lives Beverly Hills with around-the-clock care.

He had the attendees at the show rocking and swaying to the music as he danced his power wheelchair down the runway, spinning in circles and moving in a zig-zag pattern with more enthusiasm and joy than those seen in Milan or Paris.

“I love it,” said Perry, who is looking forward to working at an auto parts company in the near future after spending most of his life in the Plymouth Center. “It shows what we really can do in a positive way.”

Susan Cuddington of Utica has been caring for two disabled men in her home for 32 years and came to the event with her sister, Deb, and other family members.

“It’s fantastic to honor these people (caregivers),” she said. “Caregiving, at times, is hard, but it is very rewarding.”

Since the early 1970s, MORC and other entities began moving people out of state institutions where the disabled were housed and out into the community with caregivers 24/7 or as needed. Each time a person left a bed vacant in one of the 12 institutions in the state, it saved taxpayers thousands of dollars a month. Now, these places have closed. The disabled live in their own places and thousands of jobs have been created for caregivers.

“This is the largest event of appreciation for caregivers in the country,” said Macomb County Executive Mark Hackel, who stood and watched as more than 90 people with disabilities went down the runway with their caregivers besides them.

“This is so uplifting to see people with disabilities model high fashion,” he said. Being a caregiver is a “calling” and through events like this we learn about compassion.

He’s right.

Amanda Woodin, 22, said she only has been a caregiver for five months and “I already know what I want to do. I want to be a caregiver for life.”

She is a caregiver to Mark Stilwell and his wife, Micki, who live in Madison Heights after spending years in an institution. It was unheard of a couple of decades ago for two disabled people to be married but now it is a dream come true for many like Mark and Micki.

“I can remember how they just let me lay in a bed in Lapeer and how I developed bed sores,” said Mark, who added he never imagined being able to be married, live in his own home, and wake up each morning with anticipation instead of dread.

“You, as caregivers, are the water that lets the flower bloom,” a poem read before the fashion show began said.

One young lady dressed in a beautiful pink outfit threw kisses to the cheering audience as the words of a song, “You are so beautiful...” played in the background.

Each runway participant was able to choose his or her own song. One said: “He doesn’t want his name up in lights; he just wants to be heard.”

And, the hundreds in the hall, more than heard the voices of both the caregivers and models as they rose in waves to cheer and applaud as each person moved down the runway.

“This is a great day for people to celebrate” their accomplishments,” said Liz Bauer, a former member of the state Board of Education and a pioneer of the disability rights movement in Michigan. “What you are seeing is a gallery of the move beautiful people in the world.”

Jerry Wolffe is the Disability Rights Advocate at Large/Writer in Residence at MORC Inc.

MORC names new Futures Foundation executive director

Teresa Donaldson, who worked in the mortgage banking industry, was the owner of Donaldson’s Embroidery in her hometown of Lake Orion and as the Philanthropic Services Manager at St. Joseph Mercy Oakland in Pontiac, has been named executive director of the Futures Foundation of the Macomb-Oakland Regional Center, effective immediately.

The Futures Foundation is the fundraising arm of MORC, a nonprofit with offices in Auburn Hills and Clinton Township which provides services to 5,100 people with disabilities in Macomb, Oakland and Wayne counties.

The Foundation raises money for grants to MORC consumers so they can purchase necessities that are not covered by any other private, state, or federal program such as durable medical equipment, money to have a wheelchair ramp constructed at their home, a gym membership or whatever may enhance their lives, she said.

A graduate of Eastern Michigan University, Donaldson, said her motto is: “Never say would have, could have, or should have.”

She is married to husband Mike for 27 years and they have a son Joe, 26.

Justice Department rules private schools with voucher programs can't discriminate

The Justice Department has made a ruling to ensure that students with disabilities “do not encounter discrimination” if they are enrolled in private schools through a state’s voucher program or a private school.

The case started in Wisconsin when the American Civil Liberties Union, ACLU of Wisconsin, and Disability Rights Wisconsin complained to the Justice Department that the Milwaukee Parental Choice Program violates the landmark Americans with Disabilities Act.

"The state cannot, by delegating the education function to private voucher schools, place students beyond the reach of the federal laws that require Wisconsin to eliminate disability discrimination in its administration of public programs," DOJ officials wrote in a recent letter to Wisconsin Department of Public Instruction Superintendent Tony Evers.

In the letter, the DOJ firmly established that the Americans with Disabilities Act applies to voucher programs, with potentially far-reaching impact across the country. Currently, 19 states and the District of Columbia offer taxpayer-funded voucher programs or tax credits permitting students to use public funds for private school education.

"The Department of Justice has affirmed that private schools that receive taxpayer dollars do not operate in a civil rights vacuum," said Courtney Bowie, senior staff attorney with the American Civil Liberties Union Racial Justice Program.

"This is important not only for students with disabilities in Wisconsin, but for all students across the country, including those in Michigan, who have been discriminated against because of the effort by some states to privatize public education."

Oakland County recently had a case where a Catholic School student who was visually impaired did not receive large print textbooks as he had requested.

The school district told the boy’s parents it would cost 20 cents a word to enlarge a black-and-white word and 25 cents to enlarge a word with color so the eighth grader could read them on his own.

The incident became front-page news in the Oakland Press.

 

Oakland County Schools Superintendent Vickie L. Markavitch relented and provided the youth with the textbooks in large print that he needed, freeing up the four hours an evening he spent with his mother when they only had regular-size print.

Markavitch’s action prevented a lawsuit from being filed since large-print textbooks fulfilled the reasonable accommodation required for those with disabilities involved in state programs such as education even if they are not directly operated by the state.

Wisconsin has the oldest voucher program in the country and the Milwaukee program serves approximately 21,000 students. Currently, parents of students with disabilities are not educated about their right to use the vouchers for private schools.

The schools receiving vouchers are not monitored for compliance with the ADA, and students with disabilities are routinely suspended or expelled from the private schools for minor behavioral issues.

Together, as the 2011 complaint from the ACLU and DRW alleges, this has the effect of discrimination, systematically excluding students with disabilities from participating in the voucher program and segregating them in public schools in disproportionate numbers.

"We have said for years that the state of Wisconsin cannot ignore civil rights laws – including the Americans with Disabilities Act – in setting up and running a private school voucher system. We're glad to see that the Department of Justice agrees with us," said Karyn Rotker, senior staff attorney with the ACLU of Wisconsin.

Jerry Wolffe is the Disability Rights Advocate at Large/Writer in Residence at the Macomb-Oakland Regional Center. He can be reached at 586 263 8950.

Create system so seniors can live where they want

I remember mother sitting beside me in so many different hospitals while I waited for the gurney to come take me for another operation.

She was devoted and, although she was very nervous about what was about to happen to her first-born, she did her best to cheer me up.

“I love you and I'll be here when you get back” she’d say.

“Thanks, mother," I'd answer and when I came out of the operating room she was the first face I'd look for.

Now, she is 97 going to turn 98 and all she wants to do is spend the rest of her days in her own apartment, but it just might take a miracle to make it so.

We – my wife and two sisters – have hired five very skilled and good-hearted women to take care of mother from 8:30 a.m. to 7:30 p.m. seven days a week, leaving her alone at night because mother or her children just can’t afford to pay more than the $1,000 a week it is now costing for caregivers as mother's health deteriorates.

Mother is not the dynamic non-stop redhead she was when we were children.

She has thinning gray hair now, can’t feel below her knees because of diabetes, is barely more than 100 pounds, and sometimes forgets what day it is or who she is talking to on the telephone.

Her television is so loud in her senior apartment in Macomb County that it can be heard when someone walks into the first floor of the Utica complex.

Mother also fears the future and would rather die than be placed into a nursing home..

She is on the list for the Mi Choice Medicaid Waiver, but there is a one-year wait to receive help and her money will be gone by then. She likely and sadly faces the reality of ending her life in a Medicaid-Medicare nursing home.

There is no federal or state program that provides 24/7 in-home care for seniors who need help or are disabled.

This is a tragedy, but there is a better way. I hope this idea reaches lawmakers, the statewide mental health leaders, and those who pull the levers of power.

Why can’t nonprofits be set up to provide in-home care for seniors like my mother Carol? It is tragic to see a lifetime of pinching pennies go down the tubes paying for private caregivers or giving at least $7,000 a month to be in a nursing home where, generally, service is not good unless family visits daily.

The first of the 76 million Baby Boomers born from 1946 to 1964 are in their mid-60s. If society doesn’t put systems in place like they have for disabled people who used to live in institutions in Michigan, it will cost taxpayers billions of dollars annually to house them in nursing homes.

By creating a system where seniors can live in their own apartments or homes or in a group home and have caregivers as needed will save two-thirds at least of those billions spent on nursing homes and, most importantly, improve the quality of life of seniors. It also will create thousands of jobs for those seeking work during this "Great Recession."

It will cost about $2,300 a month in today’s dollars to provide around-the-clock care for three seniors in a group home instead of the $21,000 currently paid, an expert says.

The paradigm works. The Macomb-Oakland Regional Center created it during the past 40 years as it moved all 13,000 people with disabilities out of institutions into group homes, their own apartments or their own home.

Let’s honor our seniors and those who picked up the torch from the Greatest Generation and let them spend their final days where they belong and not in a lonely room with a bed or two and nothing to do except stare out a window and remember the days when life was sweet and full of love and hope.

Jerry Wolffe, the Disability Rights Advocate at Large/Writer in Residence at MORC Inc., can be reached at 586 263 8950.

Rich life built on efforts of trailblazers

We stand on the shoulders of giants.

Society and the people with disabilities who are no longer excluded from working, buying homes and being free to go when and where we want, owe our gratitude to those who knocked down some of the barriers the disabled faced in America during most of this nation’s history.

I know this because I have met some of those pioneers for civil rights for the disabled.

In my office at the Macomb-Oakland Regional Center, Adam Fuhrman, 31, of Troy, told me of how he is buying a home in his hometown in the Oakland County city.

“I started out in a physical or otherwise health-impaired program in Royal Oak through fourth grade,” said Fuhrman, who was born with cerebral palsy and uses an electric wheelchair. He also is driven to and from work daily by a transportation company.

“I was mainstreamed in the fifth grade in elementary school,” said Fuhrman, who graduated from Oakland University with a Master’s degree in counseling and is the peer mentor coordinator at MORC.

“I was always treated well,” he said. “The kids knew who I was and we did things together.”

Fuhrman is the only child of Janet and Kenneth Fuhrman. His dad works at an auto parts supplier and his mother is a paralegal in Southfield.

He said he provides “encouragement” to others with disabilities. “I tell them ‘You have a lot of valuable skills. You are a very good writer. You connect and interact well with others.'”

Fuhrman does this so others with development disabilities gain self-esteem and create the foundation for a successful life. It ain't easy, but Fuhrman is just such an example.

He was a bit surprised when told that it wasn’t until 1971 that the federal government passed laws requiring children with disabilities to be provided with a public education. For civil rights advocates that was 16 years after Brown vs. The Board of Education which ruled segregating students by race was illegal.

“Of those I teach, they then use their skills, successes and pass them on to others.”

One step at a time, one brick at a time and one page read at a time and we walk around the world, build skyscrapers, and learn the physics of the universe and psychology of the human mind.

When a youth, Fuhrman was goalie in a youth soccer ability league.

As for the future of those with disabilities in America, he said: “I think we are making programs in the area of gaining full citizenship and equal rights.”

“I think the term ‘inclusion’ sounds like they are allowing you to be part of something and they are the gatekeepers whereas full citizenship means everyone has equal standing.”

He said he looked for 18 months for a job after he received his Master’s degree in 2007. Fuhrman said it was through networking that he found a job at MORC, the largest human services nonprofit in Michigan four years ago.

“We’ve made a lot of progress,” he says of the disabled, “but there still is that ‘Hey Buddy’ syndrome” wherein others act condescending to a person with a disability “interacting with me more like I am a child or adolescent instead of an adult because they probably perceive that every individual who uses a wheelchair also has an intellectual disability.”

Eventually, on his shoulders this writer suspects others will take the time to get to know us better because we’re are coming into the mainstream of business, education, and leadership roles in society in a big way.

As for Fuhrman, his next goal is to find a wife.

“…God helped provide me with an education, a good job, and a house. I know he’s going to provide me with a wife someday.”

Jerry Wolffe, the Disability Rights Advocate/Writer in Residence at MORC Inc., can be reached at 586 263 8950.

Hey lawmakers: Don't mess with Michigan's no-fault insurance

Imagine waking up paralyzed from the neck down or not knowing your name.
That, unfortunately, is the reality for tens of thousands of Americans who are severely injured yearly in traffic accidents.
Then imagine after learning you can't feel your toes, wiggle your fingers or even scratch your nose that it's impossible for you to pay for the medical care, which easily climbs into the millions of dollars about as fast as the national debt has risen in the past six years.
Not only do you fight for every breath to live, you risk losing your life savings, your home and being able to provide for your spouse and children.
Oakland County Executive L. Brooks Patterson has learned some of these things after he was severely injured in a traffic accident last August at an Auburn Hills intersection. Months later, Patterson is still not 100 percent physically, but he has changed. Tears flowed down his face in his first news conference when he talked about "taking 162 steps."
Only someone who has a mobility impairment or was born with a paralyzing disability can understand why it was such an emotional moment when Patterson spoke of coming back as his daughter sat next to him in front of reporters. His 162 steps are equivalent to an able-bodied person doing a marathon and then some.
Patterson deserves a great deal of credit for working so hard that he could return to work after being critically injured in a collision at an Auburn Hills intersection last August. He was lucky. His medical costs were paid for under Workers Compensation.
For others who are injured, Michigan's No Fault coverage through auto insurance pays lifetime unlimited benefits, something some Republican lawmakers want to kill along with insurance companies.
Patterson, because of the accident, is more aware of the needs of those with disabilities and is a strong advocate for not changing Michigan's No-Fault insurance to capping medical coverage at $1 million as is being proposed in House Bill 4612. That measure is part of Gov. Snyder's plan to get rid of the unlimited lifetime benefits.
$1 million is chump change when one has a closed-head or spinal cord injury. That amount of money can be spent on medical bills in about three months.
"It doesn't take much to blow through a million or two pretty darn quickly," Rep. Eileen Kowall, R-White Lake, said in a recent interview.
Patterson's driver, a retired Michigan State Police trooper, incurred a spinal cord injury at C2 and is completely paralyzed and being kept alive by being on a ventilator. His medical costs easily have moved into the seven-figure range since when he was injured last summer.
Rep. Pete Lund, a Shelby Township Republican and chairman of the House Insurance Committee and sponsor of the bill, isn't saying if the measure is dead in the lower chamber.
But, thankfully, there's not enough GOP support for the bill to be approved, especially since no House Democrat is going to back the legislation.
Snyder, however, insists our insurance costs are too high.
There are seven House Republicans from Oakland County alone and another three from the west side of the state who are opposed to eliminating no-fault, Crain's Detroit Business reported.
Rep. Gail Haines, R-Lake Angelus, opposes killing Michigan's no-fault insurance although she usually backs Republican-introduced legislation.
She said the current bill is worse than a similar one introduced last year that was a flop.
Lund said Michigan wouldn't leave their injured people to die but taxpayers instead of insurance companies would have to pick up the cost if no fault is eliminated.
That's not right and it also is immoral not to provide the best medical help we can to those who become newly disabled through no fault of their own. Just ask Patterson. I'm sure he'll tell you how hard the road back to health and even walking can be.

Jerry Wolffe is the Disability Rights Advocate at Large/Writer in Residence at MORC Inc., a nonprofit that provides services to 5,100 people with disabilities in Wayne, Oakland and Macomb counties.

Caregiver Appreciation Day, fashion show a sellout

FYI: Tickets cost $35 and are available by calling 248-276-8109.

Some 1,200 caregivers from six counties, including Oakland and Macomb, are expected to attend a caregiver appreciation day and fashion show at the Palazzo Grande Banquet Center from 9:30 a.m. to 1:30 p.m. on May 16.

Caregivers who help people with developmental disabilities will be honored with the Caregiver Angels Award. In addition, 100 caregivers and people with disabilities will model clothes in the Kohl’s Caregiver Fashion Show.

Tim Joy from North Oakland Residential Services and Macomb County Executive Mark Hackel will address the attendees. The Shelby Township event is hosted by MORC, Inc., a nonprofit that provides services in Oakland, Macomb and Wayne counties to people with disabilities. Besides these three counties, caregivers from St. Clair, Genesee, and Lapeer counties also will attend the fashion show.

The Kohl’s fashion show is not typical in that people with disabilities and their caregivers model together. Models are selected not based on appearance but on how meaningful the experience will be to them.

“We have people who were locked away in institutions or who face extreme challenges with their disabilities who never dreamed of being in a show,” said Sue Gipperich, MORC supports coordination supervisor and host of the event.

“Caregivers and family members who model with loved ones are thrilled to see how much it means for a person to be cheered on by a crowd of over 1,000.”

Maggie Lewis with Kohl’s Cares for Kids in Rochester Hills, the show’s sponsor, said, “It is not your run-of-the-mill show and not your deadpan expressionless models. There's more screaming, cheering, laughing and smiling than you'll see at any event ever.”

Gerald Provencal, the executive director of MORC, said, “I am proud of all our caregivers who do so much to help our people live rich and full lives.”

Kohl’s is donating $15,000 worth of clothes to the models. Stylists from two salons also have volunteered to help models with hair and makeup.

The Caregiver Angels Awards, funded by Dr. Arthur Woehrlen, a Macomb County dentist, will honor 10 caregivers an “Angels” jacket, and a check for $250.  A new caregiver award will be presented in honor of Colleen O'Neill Brayton, one of the original organizers of the MORC Caregiver Appreciation Day, who died in 2012.

Jerry Wolffe, a disability rights advocate and writer in residence at MORC Inc., can be reached at 586 263 8950.

It can take years to find affordable, accessible housing

If you are younger than 62 and have a disability, the chances of realizing “there’s no place like home” for yourself are about as likely as drawing an inside straight in a casino.

“There is a two- to four-year waiting list for those under 62 who have a disability to find a place to live they can afford and is accessible,” said David Layne, one of 20 housing specialists in Michigan who tries to find those with disabilities and seniors appropriate places to live.

In the 1960s and 1970s when the Department of Housing and Urban Development created subsidized housing known as HUD 202, “seniors didn’t want the younger people with disabilities living in there,” said Layne. Under the federal program, 30 percent of a person’s gross income goes for rent.

“At one time, the homes had 5 percent of the units set aside for non-elderly with a disability and for a short period of time, there were 10 percent of the units for those under 62 and disabled,” he said. “And then it went to zero” because of protests by seniors who, ironically, didn’t want to live with those with disabilities even though many of them were disabled due to age or illness.

To live in subsidized housing rather than in a nursing homes saves taxpayers a fortune, according to the Kaiser Foundation. It found it about $2,300 a month to have a person with a disability living in HUD housing, or other community settings instead of the minimum $6,800 it costs taxpayers to place someone in a nursing home.

After finding resistance from seniors to living in subsidized housing or apartments with those with disabilities, HUD created the HUD 811 housing program for those who are disabled and under 62, Layne said. However, Congress “never funded 811s with the same vigor as they funded the 202s, leaving many hoping for the day when they can call a nice place their home.”

Meanwhile, many in Michigan and the nation who were younger and disabled still are in nursing homes or with their aging parents.

In 2012, Layne said Congress “finally significantly funded 811 housing.”

“Our hope is over the course of the next five years that thousands and thousands of units (will open up to the younger people with disabilities),” Layne said.

In Michigan alone, there are nearly 40,000 people living in nursing homes and 1.7 million nationwide.

During the past three years, Layne said transition programs in Michigan nonprofits such as MORC Inc. through Michigan Home & Community Based Services “have helped more than 4,000 people statewide move out of nursing homes.”

The Michigan State Housing Development Authority, Michigan Department of Community Health and the Michigan Disability Rights Commission, applied for 200 vouchers last year to move the disabled into their own homes but the grant request was denied.

There are 250,000 people in Michigan who are disabled and receive Supplemental Security Income and 45 percent of them live in Oakland, Macomb, and Wayne counties, Layne said.

He predicted HUD soon will be asked by Michigan representatives for 150 vouchers for 811 housing with 75 being matched by MHSDA statewide.

But, he said, “we are just scratching the surface” in providing housing needs for the disabled.

“We will give vouchers first to those in institutions and those at risk of going into a nursing home when we get (the vouchers) them,” Layne said. “We won’t quit until we get them.”

He also said some American House assisted living facilities have decided to take people who are disabled and younger, some of their properties accepting those at age 55, others at age 62.

“American House has more than 200 Mi Choice clients in their properties in Oakland, Macomb, Wayne, Genesee, and Washtenaw counties, Layne said.

“They have been a wonderful partner and very caring for those with limited resources.”

But both the HUD 811 program and initial efforts of American House to provide homes for the younger adults with disabilities is not enough, Layne said. “The goal is to have enough affordable housing units so when care is needed, everyone including those with disabilities get to say, ‘there’s no place like home!’.”

Jerry Wolffe, the Disability Rights Advocate/Writer in Residence at MORC, Inc., can be reached at 586 263-8950.

Program offers disabled and seniors choice to leave nursing homes, live in own homes

FYI: To apply for the MI Choice Medicaid Waiver program, call 866-593-7413

A day after his 59^th wedding anniversary, Jack Masters left a nursing home to return to live with his wife, Sue.

This was after Masters spent some 10 months in a nursing home after having three strokes in 2011.

His transition back to his home on Harsens Island where he and his wife retired was possible due to funding from the Money Follows the Person/Nursing Facility Transition program via the Michigan Department of Community Health MI Choice Medicaid Waiver Program. The program provides home-care services for people who are seniors or disabled and are 18 or older and eligible for Medicaid. He and his wife manage those services via the Self-Determination option.

When asked what advice he would give to people considering leaving a nursing home, Masters, 84, said: “You will feel much better, make faster progress, and accomplish more because you will be where you belong.”

Many residents in this nation aren’t really where they belong.

There are some 16,639 nursing homes in the United States with 1.7 million residents. Many of them are disabled, including the 39,917 in Michigan in such homes, according to the Kaiser Family Foundation.

This program assists those who want to leave nursing homes to return to living in a community setting of their choice. This program helps “gets them started then helps to maintain them in the community,” said Marcia Marklin, the program manager of Home Care at the Macomb-Oakland Regional Center, a nonprofit with offices in Auburn Hills and Clinton Township which provides services to seniors and those with disabilities.

When money from the federal or state government through Medicaid follows the person, “it creates housing options for the disabled, younger people and those with low incomes,” she said. “People should be able to choose where they live. This program helps to provide that choice.”

Michigan and 41 other states and the District of Columbia have implemented Money Follows the Person programs. From spring 2008 through December 2011, nearly 20,000 people have left nursing homes and returned home.

MORC alone has transitioned 157 people out of nursing homes into the community since 2005. A dedicated nursing facility team has been created to get some of the 10,051 people in Medicaid nursing home beds in Oakland, Macomb, St. Clair, Livingston, Washtenaw, and Macomb counties in their own homes or apartments with the daily care they need, said Marklin.

“The people we have helped transition are much happier, healthier and live a better quality of life,” she said.

Besides being 18 or older, MI Choice requires recipients to have a monthly income of $2,130 or less; $2,000 or less in assets (excludes one home, one car) and requiring nursing home level of care.

Caregivers are provided to do errands when people are moved out of nursing homes into places of their own as well as help with personal care, dressing, provide adult day care and other daily living tasks.

“We help support some people in the program who are 100 percent disabled and they have caregivers 24 hours a day, seven days a week,” said Marklin. “There’s sometimes a combination of paid workers and family members who are not paid.”

MORC, which started trying to move people into homes or apartments before the federal program began 21 years ago, receives annual funding of $8.7 million from MDCH for the MORC Home Care Inc. division.

Jerry Wolffe is the Disability Rights Advocate/Writer in Residence at MORC Inc., a nonprofit that provides services to people with disabilities in Oakland, Wayne and Macomb counties. He can be reached at 586 263 8950.