Hahnville grad with Down syndrome becomes advocate for those with disabilities

 by Kyle Barnett from the St. Charles Herald Guide:
Craig Blackburn has a motto by which he lives.
“Never give up. That’s my message. Never give up,” he said. “If you have fears don’t look back, look ahead.”
That is a message the 34-year-old Hahnville High School graduate has been carrying through his entire life, and Blackburn has had to overcome a lot. He was born with Down syndrome as well as a heart defect that had to be repaired through open heart surgery when he was an infant.
Now, Blackburn has been able to accomplish so much that he has become an advocate for others with disabilities.
He is on the board of the Down Syndrome Association of Greater New Orleans and regularly travels the region and country giving speeches to educators and those within the disabled community. In recent years, he spoke to a crowd of 1,300 at Tulane University and also traveled to Qatar to give a speech.
“It’s about educators and families and their child’s future to tell them they can do it and not to give up on their dreams. When I do my presentation it is like making them believe what they can do and don’t look back,” he said.

Those with Down syndrome living longer, better lives

by Allen Mask, M.D. from WRAL.com:
Durham, N.C. — Ishan Munshi is a resource specialist at the Lenox Baker Children’s Hospital at Duke.
The 21-year-old also has Down syndrome.
In the Down syndrome program at the hospital, Munsi is someone that patients can look up to. That includes 16-year-old Matthew Schwab.
“I asked him how to get a girlfriend,” Schwab said of his most recent conversation with Munshi. “He had something quite interesting to (teach) about that.”
What was Munshi’s advice? “Be very gentle,” he told the teen. “Do not make a girl cry.”
Whether the topic is girlfriends, getting a job or going to college at the University of North Carolina Greensboro, like Munshi does, it all represents a dream for many people with Down syndrome, a genetic disorder that affects one out of nearly 700 people born in the United States.
Schwab calls it being a self-advocate.
“What it means to be a self-advocate is to be real independent,” he said.
Dr. Priya Kishnani, a Duke pediatrician and medical geneticist, says there are numerous advances for children born with Down syndrome, including the correction of heart defects and medicine to improve cognition.
They're living longer – often longer than their parents or caregivers.
“We've got to find ways to allow them to be independent in society and to make contributions to society,” Kishnani said.
Munshi's contribution is hope for others born with Down syndrome and for their families.
“They need freedom. They need to be happy, not feel sad and making the parents sad – that isn't good,” he said. “But it's a good thing to talk about how they feel from the heart.”
Munshi’s position with Duke is supported by funding from Anna's Angels, a Cary nonprofit that funds research and programs in Down syndrome.

woman with Down syndrome Charlotte Gregory sings at Lincoln College ceremony

from This Is Lincolnshire:

The parents of a woman who was not expected to live past the age of five watched proudly as she starred in a song and dance routine.

Charlotte Gregory, 22, who has Down's syndrome, was among 150 students with learning difficulties or disabilities to collect awards in a ceremony at Lincoln College.

When Charlotte was born, her parents were told she would never walk or talk.

But she sang Rudolph the Red-Nosed Reindeer, Last Christmas and Rockin' Around the Christmas Tree in a 16-strong chorus at the event.

The former Queen's Park School pupil, who collected her commendation in skills for independent living and work, said: "It was wicked to be up there performing.

"I was singing in the group in front of so many people, but I wasn't frightened."

Mum Sandy Gregory, 57, of St Peter's Avenue, Boultham, Lincoln, said she was "so proud" of performing arts student Charlotte.

"It was amazing," she said.

"I did not think in a million years that she would stand up in front of so many people and sing and dance her heart out.

"We were told she would never get to five – look at her now."

Dad Mick Gregory, 51, who works for Lincoln Audi, said: "I thought she was excellent.

"She was doing hairdressing before but did not settle.

"When she started doing dancing and acting I was not sure at first but now I think she's doing really well."

Charlotte's learning support assistant Nina Cook said watching the performance made her feel like a proud mum.

"It was a happy occasion for everyone involved," she said.

The E2EE awards ceremony on December 20 marked students' achievements in sport, drama, construction, retail, care, hair and beauty, car mechanics, hospitality, horse care and horticulture.

Katey Bishop-Wilson, coordinator of skills for working in performing arts and tutor, said: "Many of these students have overcome so many difficulties in their lives.

"Even coming to college has not always been easy for some of them.

"But by coming here, they have had the opportunity to succeed, whether that's improving upon their social skills or gaining employability skills and getting out there and achieving."

Worker with Down syndrome aims for more independence, money

Michael Minkow, who has Down syndrome, works in a job-skills training program that works on military hats. For the holidays, he said he would like a new dresser to replace his broken one, new clothes and money to enjoy time with friends.
by Lidia Dinkova Special to The Miami Herald:
In a large room with yellow walls and fluorescent lights, 50 adults with cognitive and physical disabilities sit around school-cafeteria tables. They are putting miniature plastic pieces on strings that will later be attached to military hats.
Some are eager to show off their craft to visitors. Others prefer to decorate the Christmas tree.
In the crowd and hard at work is Michael Minkow, a 52-year-old with Down syndrome. The condition is caused when people are born with an extra chromosome, and, in Minkow’s case, may cause cognitive disabilities impaired speech.
It’s easy to notice Minkow in the crowd. He is decked out in his best clothes for a Wish Book interview. In light-gray suit coat with gold cuff links and dark-green suit pants, he is quick to make friends and is happy to explain his work
“Put them in one hole and then in the other. I do a lot,” he said.
For years, Minkow has been working at the Adult Day Training program, part of the nonprofit United Cerebral Palsy of Miami in Overtown. At the training program, he and others learn social and employment skills while on the job.
“I’d like to keep working here. I want to do more work and receive more money for the work,” Minkow said.
He said he would use the money to spend time with friends. “Because that’s my hobby – to go out.”
His favorite pastimes? Bowling, eating out, going to the movies and shopping for clothes.
But at 5 cents payment per each piece strung, the salary isn’t much. His paycheck for two weeks of work varies from $4.50 to $15.50, depending on how fast he works. On a good day, he manages to string about 30 pieces.His tight budget limits his freedom to go out as often as he would like. So this year he is asking for gift certificates to restaurants, including his favorite one, Outback Steakhouse, as well as for funds that he could use for grocery shopping, bowling and movie tickets.
In addition, he would like new clothes and a new dresser because the one he has in his apartment is broken.
Minkow lives in a Hope Center apartment building in Kendall . Hope Center is a nonprofit affiliated with United Cerebral Palsy of Miami. It provides supervised community-based living for people with cognitive and physical disabilities. Minkow’s home is about an hour-and-a-half ride on the public bus from his Overtown job. He has to get up at about 6 a.m. every weekday to be at work on time. He rides with other apartment residents, who also work at United Cerebral Palsy of Miami.
“I talk to them. I am always nice to them,” he said.
Indeed, “nice” seems to be the first word that comes to mind once you meet Minkow.
As he walks down the hall at United Cerebral Palsy of Miami, he stops to greet administrators and gives some of them a hug.
“He is very kind,” said his mother, Gloria Sheehan, 79. “He likes to help people. If he could help them do something, he would.”
On a recent visit to the Overtown center, he and others listened to a musical therapist play guitar. They began clapping along with the music and before long, Minkow joined by tapping his hands on the table.
Then, it was time to decorate their holiday cards.
Minkow said he painted a Hanukkah tree on his card. He plans to give the card to his roommate and friend John Allen. The two often go shopping together at Publix and also go bowling.
“Sometime Johnny Allen wins, and sometimes I win,” Minkow said.
But nothing makes him as happy as talking about his mother and visiting her. When asked his three wishes for this holiday season, his ocean-colored eyes brightened and his face beamed: “Go home, go home and credit cards.”
He lives in his Kendall apartment most of the time, but he refers to “home” as his mother’s Delray Beach condo where he visits every two weeks.
“We have fun. We go out, and sometimes we eat Chinese food,” he said.
While his first two wishes are already fulfilled — he will stay with Sheehan for about a week during the holiday season — he needs help for his third wish. Instead of credit cards, donations and gift cards for leisure activities are requested.
Minkow was born in Brooklyn, where he attended a public school for a couple of years before he transferred to a private Catholic school in New York, followed by another private Catholic school in Pennsylvania.
Once his family moved to South Florida, he also moved into the Hope Center. That was 33 years ago. Here he has made friends and settled into a happy life. Sheehan hopes he will stay at the center. Through the organization, he has grown to be independent.
“He is pretty much self-reliant. He manages. In the other places he was treated like a child. Now he is treated like an adult, which is what he is,” said Sheehan, adding that he made a big accomplishment by successfully transferring from the Hope Center dorms to the nonprofit’s apartments where residents are more independent. “I don’t want to uproot him. He is very happy there.”

Read more here: http://www.miamiherald.com/2012/11/28/v-fullstory/3117490/worker-with-down-syndrome-aims.html#storylink=cpy

hospital budget cuts could end independent living

by Brix Fowler from NBC 33 TV:
Kathy Edmonston's 30-year old son Zachry has Down syndrome. To help take care of him, she's getting assistance from both the federal and state governments. That has allowed Zach to live relatively independently. This means having an apartment and holding down two jobs. He even has time for a girlfriend.
"We've been able to, sort of, demonstrate independence and give him that opportunity to be that independent individual that he is. So, it's been a real success story," says Kathy Edmonston.
That success, however, is in danger for those living in Louisiana with similar situations due to a more than $850 million reduction in federal Medicaid assistance. This has meant laying off workers, streamlining services and closing down healthcare facilities.
"She's back on grade level with the rest of the kids her age, "Roselyn Davis, said. "When you think of a three to four year deficit, to be able to make that up inside of a year and a half, I think it's awesome.”
One of the hospitals closing is Southeast Medical Center. Davis' 16-year old daughter, Kayla, has been going there for more than a year and a half to treat her bipolar disorder. But with Southeast set to shut its doors at the end of the year to save Louisiana around $1.5 million. She’s afraid this decision will put her daughter's life is in danger.
"One of my greatest fears has been that one time that she's successful. That time when she doesn't wake up," says Davis.
On top of the massive reduction in federal Medicaid assistance more than $150 million is set to be slashed from the LSU Hospitals' budget. That means more than 1500 positions are set to be cut, including more than 340 at Earl k. Long hospital in Baton Rouge.
"When you change the system all at once in four weeks or six weeks that's quite draconian," Dr. Paul Perkowski, a Baton Rouge-based physician, explained.
Dr. Perkowski says the cuts are having an effect on more than just the care patients are receiving. It's also causing a brain-drain that could cause future doctors to leave the state and not come back.
"Those medical students and residents in training now no longer have a hospital to practice their craft, to train in their craft," Dr. Perkowski continued. "So, if those residents leave for other opportunities because their hospital is closing or experiencing budget trauma, then those residents are unlikely to practice medicine in Louisiana."
Roselyn hopes that doesn't happen. For now, she and Kayla are doing the best they can with seemingly ever-decreasing resources.
"Today is a little bit better than yesterday. It's a day by day process. Sometimes it's hour by hour. We don't make a lot of plans," she said. "We just take it as it goes."
We want to know what you think about hospital budget cuts. Tell us how this will impact your family on the NBC33 Facebook page.

My Special Child: Man Proves Life with Down Syndrome Can be Fulfilling

by Abby Eden from Fox4KC:
In America, the abortion rate for a prenatal diagnosis of Down Syndrome has dropped to 67 percent, according to a study released earlier this year by the National Institute of Health. Yet many people argue that 67 percent is still too high.
In honor of Down Syndrome month, this “My Special Child” report, reminds us that many people with Down Syndrome can complete high school, attend college and be gainfully employed.
Though Lee Jones has Down Syndrome he’s been making great accomplishments since he was just a little boy. It’s a message he wants these medical students to hear.
“Everyone, whether they have a disability or not have the right to have their own dreams, just because a person has a disability doesn’t lessen the importance of their dreams,” said Jones.
Lee learned to read at the age of three, was developing athletically by kindergarten, he graduated from high school, then from college with a bachelors degree. Today Lee lives on his own and works two jobs, including one at the Kauffman Foundation.
“I pass out mail, I know people really well so, I interact with them when I do that, then I do photocopying, mailing, scanning,” Jones explained.
Lee attributes his accomplishments to his personal determination and realistic goal setting. He also attributes his parents’ relentless commitment to his learning which was done with many small steps.
“I did my own laundry when I was in middle school at home,” he said.
Many times it was Lee who was setting the goals, like learning to drive and learning to scuba dive, and yes, it was much harder for Lee.
“We were studying for an algebra test in high school and Lee and I were both to about the breaking point, and he said ‘Mom don’t you realize this is hard for me?’ And I said sure,” Carolyn Jones, Lee’s mother, said.
It may have taken Lee longer to learn, but today, he’s far from being a burden on society.  He works, he volunteers, and he is teaching the rest of us what people with down syndrome CAN accomplish.
October is Down syndrome month. For more information, resources and success stories visit the National Down Syndrome Society’s website at www.ndss.org
Find me on Facebook:  Abby Eden Fox 4
Follow me on Twitter:  @AbbyEden
Email me:  abby.eden@wdaftv4.com

Princess Diana's goddaughter who has Down syndrome ‘When will I be normal?’

from the Daily Mail by Rosa Monckton:

Having been away for a few days, I walked into the house to be met by my 16-year-old daughter, Domenica, usually so happy and bouncy.

‘Why am I a Down’s Syndrome?’ was her greeting. ‘Why can’t I do maths?’ Followed by the most heartbreaking question of all: ‘When will I be normal?’

As a mother, you always worry about how your children will cope when you are not there, but you can reconcile yourself to the idea that they will be fine, and independence will be the making of them.

Every September, there appears a flurry of agonised articles by mothers wondering how they will cope with empty-nest syndrome as their children leave home for university.

As a mother of a child with a learning disability, I would give anything to have that problem, and I read these articles through tears of rage.
 For every parent of a disabled child, the thought of that child becoming an adult is terrifying and all-pervasive.

I know that in some sense Domenica is never going to grow up, even if the law, once she turns 18, will regard her as an adult like any other.

Domenica, despite her encyclopaedic knowledge of teenage programmes on the Disney channel, cannot tell the time.

She is unable to tie her shoelaces or her dressing-gown cord. She cannot put her hair in a ponytail or go out on her own. And none of this will magically change when she becomes an adult in the eyes of the law.

This turning point is a huge problem for those with a learning disability. There is no allowance for the fact that a disabled child will become a disabled adult, seemingly no understanding that a lifelong learning disability is exactly that – lifelong.

Overnight, vulnerable children are thrown into the lion’s den of adult services, often with disastrous results.

There needs to be a recognition that a learning disability does not change from childhood to adulthood. Perhaps part of the problem is the replacement of the word ‘handicapped’ with ‘learning disability’.

The impression created is that we are dealing with people who are just a little bit slow.In general, when people talk about disability, they mean a physical disability. In those cases, the person with the disability is as self-aware as anyone is, but when you are dealing with a mental disability the issues are much more fraught.

I find it very difficult to explain to Domenica why the people she was at school with have moved on, and all seem to be doing things she is unable to do.

The looming question, that colours every decision I make, is: what will happen to Domenica when we are no longer around to look after her? She fears independence because she is self-aware enough to know that it will be very difficult for her.

I wanted to meet other parents on the same journey, and this became the subject of the BBC documentary Letting Go, to be shown this week.While making the film, I met a mother whose life expectancy was limited, and who had to make the terribly painful decision to move her teenage son out of her home so that he would have time to adapt to living somewhere else before she died. 
 I am in touch with one mother who is in her late 80s, and her disabled son, who is now in his 50s, has always lived at home. He is not capable of living anywhere else and she is confronted with her own mortality. It is far too late for him to adapt to living elsewhere.
 Domenica has always been in mainstream education. A school for pupils with mild learning difficulties would perhaps have been better – madness, a child like Domenica sitting in a chemistry class – but, within our county, they have all been closed.
 She has now been lucky enough to get a place at Chickenshed, an inclusive theatre company and performing arts day school in North London. She is doing a BTEC extended diploma in performing arts, a sixth-form course.

She is happy there, but is now convinced that she could have a career on the stage, and be a pop star and a supermodel. She sees no reason at all why this should not be possible. I realise many children of The X Factor generation have these delusions, but it is particularly pronounced in a child like Domenica.

I don’t in any way want to limit her horizons, but I feel that I must manage her expectations. I have to make sure Domenica has certain skills that will perhaps, in the future, enable her to get out to work, and be part of a community.

She has already done a week-long waitressing course at Chalk Farm Hotel near Eastbourne, which employs and trains only people with learning disabilities, and I will encourage her to do more in that vein.

It is very important for all people with learning disabilities that they become as independent as possible, and don’t stagnate in some form of institutional care, staring slack-jawed at a television screen all day long.

It is vital to have the sense of self-esteem that comes with doing some honest work, if they are at all capable of it.Where these young adults live is an overwhelming problem for parents. The disability lobby in this country has been driven by those with physical difficulties, while those with a learning disability have been dragged along in their wake.

While it is absolutely right that people with physical disabilities should be living independent lives, it is not necessarily appropriate or even possible for those who are more vulnerable and trusting.

There is an ideology that says that everyone is the same, and has the same right to live independently. This is putting people with learning disabilities into inappropriate accommodation, often with only two hours of care a day, and in flats on their own.
 The sense of isolation that they feel, but cannot express, is heartbreaking to witness. What sort of society thinks this could be a suitable way to live? What sort of society allows the social worker, without the parent present, to interview the ‘client’, and after half an hour decide a flat in the community is an appropriate setting?
 Some inspirational parents I know, unable to find somewhere suitable for their daughter, rented a house in Hove, where she now lives with four friends.
 There is always someone there at night, and the number of carers in the day depends on what they are doing.
 The atmosphere in the house is that of any group of young people living together. There has been such a demand for places that they have now opened two other houses. They have constant battles with the local authority, which would prefer for these young people to be living in single-occupancy flats.

One mother told me that her daughter, who has Down’s Syndrome, was moved into a flat on her own. After six months, she had put on five stone. Her mother spoke to the social worker, who replied that ‘It was your daughter’s choice’ to eat all day long, and cited the Human Rights Act. This young woman is not capable of making such a choice, and needs support and guidance, not another packet of crisps.

 Another mother wrote to tell me that an Adult Services Reviewing Officer had written to her daughter, asking her to think about her ‘goals for the year’, and what she was ‘hoping to achieve’. Her daughter cannot walk, talk or feed herself, and has no mental capacity.
We have a system in place in our country that is supposed to support the most vulnerable, but it is failing. It has become so complex and unintelligible that it is not helping those who need it most.
 I accept a system that hopes to deal with disability from cradle to grave cannot have clear-cut simplicity, but over the years there appears to have been little joined-up thinking, and I suspect even the professionals have lost their ability to make good decisions.
 One vast improvement would be to have a single assessment of the needs of families, rather than the endless to-ings and fro-ings between various departments that currently makes the system both intimidating to the user and far too time-consuming.
 In opposition, David Cameron, who himself was the father of a severely disabled child, told me that this would be his preference, but nothing has changed.
 I have had dealings with Government: I have sat on various committees, had meetings with Ministers, and even one with the Prime Minister, but there seems to be a bureaucratic inertia that is holding the Government back from making the necessary changes.
 In 2010, George Osborne announced an extra £2 billion a year for social care by 2014 in his Comprehensive Spending Review, but this money – supplied by the taxpayer and granted to local authorities – is not ring-fenced.
 Local authorities are not legally obliged to spend the money on what it was intended for, resulting in a postcode lottery for parents.
 The Government defends this on the grounds of ‘localism’, and says it is up to the local authority to decide whether to use it for the purpose it was given.

As a result, I know of several parents who have had to move away from their families and friends in order to secure better provision.  All I want for Domenica is for people to accept her as I do, to recognise the contribution she can make, and to keep her safe.
 All my maternal instincts scream at me to keep her with me at home for ever. But then what happens when we die?
 And here is how I answered her questions. ‘Why am I a Down’s Syndrome?’; ‘You’re not, you are Domenica.’
 ‘Why can’t I do maths?’;  ‘I can’t either.’
‘When will I be normal?’; ‘No one is normal, we are all different.’
But some are more different, and more vulnerable than others.

Adults With Down Syndrome Can Live Independently And Have A Satisfying Life

from WebWire:

Adults with Down syndrome are more able than ever to live independent lives. A detailed transition plan developed early in a child’s school years can be the key to success.

Many parents worry that their children with Down syndrome will never be able to be self-sufficient. But that is not necessarily the case. According to author Craig Kendall, "Young adults with Down syndrome can work. They often live on their own with some help, and some even get married. A transition plan can make all the difference" The best time for parents to develop a transition plan is before their loved one leaves school.

According to Craig Kendall, co-author of "How to Live, Love and Succeed with Down Syndrome" parents should develop a transition plan a year or so before their your loved one leaves school. Every person with Down syndrome is different, of course, so no two life courses will be the same. Kendall recommends that at least a year before a child is getting ready to leave school, the parents meet with school officials and try to develop a transition plan for them.

"You will want to consider several things" says Kendall. "Do you think your child is able to work? Young adults with Down syndrome can hold a variety of jobs, for example, working in restaurants" The article How to Live Independently and Have a Satisfying Life for Adults With Down Syndrome, states that many Down syndrome adults lead an independent life; and new types of jobs are creating opportunities that never existed before. According to the web site http://www.downsyndromehope.com/, living life independently is possible as long as parents follow some basic steps.

physician gets $3M grant for down syndrome research

from Fox 13:

Twelve-year-old Lily Smith is rarely without her mother. Her mother knows Lily will never progress to a point mentally where it will be safe for her to leave home. Lily is one of many that University of Utah researcher and physician, Dr. Julie Korenberg, is trying to help.

Korenberg is studying those with down syndrome, hoping new discoveries will pave the way to bettering their lives.
 "This is the time to apply very basic understandings of the brain to helping people and Utah is the place to do it," Korenberg says.

Utah is the optimal place because it has the highest rate of babies being born with down syndrome because most women here choose to keep their baby after they receive diagnosis.

"This is a family place. This is a place where people work together," Korenberg says.

And that cohesiveness is helping the doctors find many participants willing to take part in her research.

"We have a mouse that has down syndrome and we've found that if we just change it's surroundings to a simpler setting, we can help it learn," Korenberg said.

The type of research may one day help children like Lily be able to live on her own
With the help of a nearly $3 million grant, Korenberg hopes to find answers to how those with down syndrome can become more self sufficient and possibly how pregnant women could be treated to prevent the disorder from occurring.

The grant money will fund the next five years of research. Korenberg says it is only the beginning of the research she plans to do to help better the lives of people living with Down syndrome.

"Monica & David" gets Emmy nomination

 

The marriage of David and Monica Martinez is the subject of "Monica & David" which is nominated for an Emmy award. (Courtesy: HBO)

from Disability Scoop:

A documentary about the marriage of two adults with Down syndrome is up for an Emmy award.

The film, “Monica & David,” premiered last fall on HBO. It followed Monica and David Martinez as they prepared for their wedding and subsequently learned to establish an independent life for themselves as newlyweds.

Now the documentary has been nominated in the outstanding informational programming category of the News & Documentary Emmy Awards.

Winners will be announced Sept. 26 at a ceremony in New York City.

This is not the first honor for “Monica & David.” The film was named best documentary feature at the prestigious Tribeca Film Festival last year.

wanting to live as independently as possible

from miamiherald.com:

How will my child fare when he leaves home? And what will happen to him when I'm gone?

These are questions most parents worry about. But they weigh especially heavily on the parents of children with autism, Down syndrome and other developmental disabilities.

"Parents say this all the time: 'When I'm no longer here, I want to know they're still going to have a place to live and somebody is going to make sure they're OK,'" said Jim Whittaker, executive director of The Arc Jacksonville. "That's the biggest fear the majority of families have."

It's a fear that will become even more common in coming years, as the growing number of children with disabilities become adults with disabilities.

When The Arc recently began moving forward with plans for a 32-acre community near Beach and Hodges boulevards - planning to break ground in 2013 and have the independent and semi-independent living ready in five to 10 years - Steve and Joy Gutos were among those who viewed it as a godsend.

Their 25-year-old son, Ryan, lives at home now and has a part-time job as an office assistant at the Duval County Public Defender's Office. But he would like to eventually live in his own place. And his parents would like to know the place is a good fit for him, not only now, but in the future.

They've spent years researching options near and far, not feeling quite comfortable with group homes or supported living in the general community. Something like the Hodges Community seemed like the perfect mix of independence and structure.

"We're not saying the other alternatives are wrong, but we believe this is what is best for our son," said Steve Gutos, a board member at The Arc. "It's certainly a choice that needs to be there for everyone."
Not everyone agrees.

The federal government has proposed a rule change to Medicaid - specifically the Home and Community-Based Services Waiver - that would mean such funds could still be used to live in group homes and supported living in an apartment or condo, but not for something like the Hodges Community.

"It's not going to kill it," Whittaker said. "But it is going to make it much more difficult for people who don't have means to live there."

The reason some want the rule: They believe a planned community like this is a step backward toward the days of institutions. And they say the rule, which would only permit funding for care that allows patients to "engage freely in the community," would ensure the inclusion of disabled adults into society.

Supporters of The Arc's plans say the community would be anything but institutional - and would be a better fit for some than a small group home or supported community living.

"The Arc Jacksonville and these families aren't saying to other families we want to take away your choice," Whittaker said. "We just want this other choice."

So during a public comment period that ended on a Tuesday, supporters of the Hodges Community have been writing letters to the Centers for Medicare and Medicaid Services (CMS).

One of those letters was written, with the help of his mother, by Ryan Gutos.

He and his parents have visited some very nice group homes. But he told his parents he didn't want to live there, that they seemed too restrictive. And the idea of trying to live mostly on his own, in the general community, didn't appeal to him (and concerned his parents). A community designed for adults with disabilities excited him (and gave his parents peace of mind).

In his letter, he explained that he has lived at home with his parents and younger sister, but eventually would like to live in a neighborhood with his friends. He wants to drive a golf cart around the community, hang out, go to church, listen to country music and keep working at the Public Defender's Office.

"If this rule is passed, I won't be able to live there," he said. "Please allow my funding to stay with me no matter where I choose to live."

In her letter to CMS, Joy Gutos explained there isn't a "name or label" for her son's disability, other than that he is developmentally delayed. She explained many of the things he can do. Dress himself, get ready for work, ride his bike around the neighborhood, win over people with his endearing demeanor. But she also said, "Ryan will never make wise decisions. He always will be vulnerable."

She described how he can count money if he tries really hard, but can't tell how much he should get back from a transaction. He won't give himself medicine. He doesn't turn off the shower unless told to. And just when they think he could live in the general community, there is some incident that reminds them he needs more security and supervision.

"If he has these two things, he will surprise us, as he has many times in the past, not with his disability, but with his ability," she wrote. "The Arc Jacksonville has plans to build exactly what we're looking for."
She pointed out that the rule will continue to allow this funding to be used for hundreds of retirement communities in the state. But if enacted, it won't be available for the small handful of communities developed or planned for disabled adults.

Could Ryan continue to live at home? Absolutely, she said. But is it the best thing for him? Not at all. He doesn't want to live at home forever. And, of course, the reality is that he can't.

"There are no other family members who can take Ryan in when we are gone," his mother wrote. "This is his future. Please do not impose this rule on us."