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Five Ways You Can Keep Your Sanity during Quarantine

By Michelle Myatt, MSW, M.Ed, Vice President 5p- Board of Directors

  1. Take time for yourself!
    Stay hydrated and eat well. Good nutrition is vital to keeping you on your toes. Make sure you are staying active. Take a walk, find an exercise routine online or make one up with items you have at home. Enjoy hobbies you normally don’t have time for. Carve out 30 minutes a day that is just yours…this might mean getting up before your children or having older children watch younger siblings. This is your time to spend anyway you want. You will be better because of it. I promise.
  2. Forget the housework and chores for a few minutes and find time to just play with your kids. As parents, we are always so wrapped up in doctor appointments, therapy, schoolwork and playing taxi for all the activities our kids are involved in. Play time is good therapy for adults and kids alike. Reconnect with your kids and learn something new about them. Build a fort out of blankets, play board games, make up a scavenger hunt (inside or outside), have a dance party in the living room or make a craft together. You might even make items to leave on the porch for loved ones you are missing.
  3. Make a routine for yourself and stick to it. Pencil in the time for you, chores (let the kids help you) and time to help your kids get through their schoolwork. If you are working from home, add this time to your schedule as well. Make sure you are going to bed and waking up at the same time each day. Shower and dress just like you would if you had to leave your home for work or school. Routines are important and allow us to feel as if we have some control over our day. We can look back at a checklist and see what we accomplished that day.
  4. Limit your time watching and listening to COVID-19 updates. It’s good to be aware of your surroundings, but it’s also easy to become consumed by the sadness and anxiety that comes with inundating yourself with too much. Instead, reach out to friends and family. Call someone you haven’t spoken to in a while. Don’t forget those in nursing homes who are feeling very isolated right now. Did you meet someone at the last 5p- Society Conference? Contact them and see how they are doing.
  5. Lastly, if you feel as if you are really struggling, reach out to self help groups in your community. Your child’s school social worker or counselor would be a great place to start. They are well-aware of the resources in your area. If you need to chat with someone regarding concerns for your Cri-du-Chat child, you can find contact information on the 5p- Society web page.

Five Ways to Help My Children Cope with Quarantine

  1. Routine – stick to a schedule. Write it out, take pictures and make a visual schedule, or record it on your child’s device or tablet. Kids want to know what is expected of them and what they will be doing. This is a great time to remind kids to be flexible. Sometimes routines change. When they do, outline some ways you expect your child to cope with those changes (use their words, take a deep breath or two, or hug a teddy bear real tight)
  2. Nutrition – make sure your kids are not snacking so much throughout the day that they do not eat the nutritious food you prepare for main meals. This only frustrates everyone. We all know how moody kids can be when they are hungry or thirsty. Their bodies are sensitive to big changes in blood sugar. If your child has a feeding tube…you might need to set a timer to remind yourself. You have a lot on your mind right now and we cannot always depend on our kids to tell us they are hungry.
  3. Communication – talk to your kids at their level about Corona Virus and Quarantine. Give them facts that you feel they can handle without overwhelming them. Keep adult conversations away from little ears and limit their time in front of the television where updates seem to be constant. If you are having trouble talking with your child about what is going on, try reading the social story I have included. I wrote this for my daughter, Delaney (14) who is struggling with why we can’t see grandma and why we can’t go to school. You can have typical siblings illustrate the book which will also be good for their little minds as well.
  4. Social – our kids are missing so many important people in their lives. Make video calls to friends and family regularly. Don’t underestimate how helpful it is even to toddlers to see and hear their favorite people, even if it is through a screen. My ten-year-old has started handwriting letters to friends and mailing them. These are kids who have grown up with technology. So, the idea of writing a letter, dropping it in the mail, and learning to be patient while you wait for a return letter, is relatively foreign to them. It helps to break up the monotony of life right now. This works for grandparents too. Remember how fun it was to have a pen pal when you were little?
  5. Behavior – this is a crazy time for everyone with so many uncertainties. When kids feel stress, they communicate that through their behavior. You may see an increase in nightmares, whining, meltdowns and maybe even aggression. In addition to following the steps above, try teaching little ones to take deep breaths by blowing bubbles. You can make a spot in the house where your child or children can go if they are feeling overwhelmed. Give them pictures of family members and friends to look at, a stuffed animal, pillows and a soft blanket. Some kids may love to listen to music or even play an instrument. Big bear hugs or maybe a warm bath might be helpful. There are many scents that can be calming as well…lavender and eucalyptus are two of our favorites in my house. Lower your expectations a bit and give kids the benefit of the doubt when you can. They, too, are handling this the best way they can. They will be watching you for cues, so be sure to show them how you are taking care of yourself as well. Keep reminding them that this won’t last forever. We will get through this…together.
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A Social Story About COVID-19

By Michelle Myatt, MSW, M.Ed, Vice President of the 5p- Society

I wrote this story for my daughter Delaney so she could understand what is happening around her.

The Corona virus, or COVID-19, is a germ that makes people sick. It causes a cough, fever, and other yucky symptoms. I don’t like to be sick.

But I can stay healthy by washing my hands often with soap and water. I can also stay home and away from others. When I go out to walk or play outside, I should stay two to three bubble spaces away from people who do not live in my home.

Although it is good manners to shake hands or give high fives, right now I need to keep my hands to myself so that everyone stays safe and healthy.

I feel sad to not be able to see my friends or hug my teachers. I wish I could go to school. But it is closed right now while the corona virus is in the air.

When I feel sad or nervous, I can ask those who live in my house for a hug. I can also squeeze my stuffed bear or love on my pet. I can go outside to play in my yard or go for a walk. I can even read a book.

I don’t like being stuck at home so much. But I know it is important, so we all stay healthy. I do like being able to see my family more. My siblings are also out of school and my parents are working from home. I know this is hard right now, but it won’t last forever. One day, I will be able to go back to school and see my friends and family that I miss. Then I will be so happy again.

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Special Needs Trust Basics: What You Need To Know

Learn why it’s important for you to have a special needs trust for your child with a disability, and how you can start funding it immediately.

Rachel Stanford’s son Miles is 10, and has a developmental disability caused by a rare genetic syndrome called Cri du Chat. Miles was also diagnosed with ASD. 

Rachel describes Miles as being impulsive, with no sense of danger, non-verbal and sensory issues and, likely, will need lifelong care. 

“Right after Miles was diagnosed, my husband and I knew we had to do something to provide for his future,” says Stanford. 

Rachel knew that she and her husband, Matthew, couldn’t leave money directly to Miles without jeopardizing access to government benefits. So they hired an attorney to prepare a “special needs trust” in which money could be set aside for Miles’ care without risking the loss of benefits he’d otherwise be entitled to.

What is a special needs trust?

A trust is an arrangement where one person (the grantor)  gives assets, such as cash, investments or real estate, to a trustee. The trustee manages the assets on behalf of someone else, who is called the beneficiary. The assets set aside in the trust by the grantor is not directly owned by the beneficiary, but instead the beneficiary benefits from the assets in the trust pursuant to the terms of a written trust agreement.

A special needs trust is a particular type of trust designed for a person with a disability who is likely eligible for government benefits, such as Supplemental Security Income (SSI), Medicaid or subsidized housing. A person with a disability may not qualify for these benefits if they own assets in their own name. 

Because the beneficiary has no control over the assets, they are ignored when determining eligibility for government benefits.

The trust agreement for a special must be carefully worded in order to preserve eligibility for government programs. For example, the trust must state, among other things, that is intended to provide “supplemental and extra care” beyond that which the government provides, and that it is not intended as a basic support trust.

This means that the trustee cannot just give cash to the beneficiary, but instead, purchases certain approved items on behalf of the beneficiary that provide for their supplemental care. According to FindLaw, this can include: 

Paying for medical and dental care, equipment, education, treatment, rehabilitation, eye glasses, transportation (including vehicle purchase), or insurance (including payment of premiums of insurance on the life of the beneficiary), essential dietary needs, spending money, electronic and computer equipment, vacations, athletic contests, movies, trips, money with which to purchase gifts, payments for a companion, and other items to enhance self-esteem.

Do I need a lawyer to set up a special needs trust?

You are not required to hire a lawyer to create a special needs trust. There are books and online resources that can guide you through the process. 

However, the creation of a special needs trust may also involve updating (or creating) a will, and thinking through some difficult questions about alternate trustees and how to provide for siblings. Often, people find the process to be a bit more complicated than they are comfortable taking on themselves and end up hiring a lawyer.

This was the case for Rachel Stanford, who is an attorney herself. 

“I don’t practice trust and estate law, but I knew enough that we had to do something to provide for [Miles’] future,” says Stanford. “A coworker advised me about how to do this and recommended a lawyer who could help us get it done. There are a lot of things I will try on my own, but this is so specialized, I just didn’t want to mess it up.”

[Incidentally, I am also a lawyer and, like Rachel, not a trust and estate attorney. I did start to do the research to draft a special needs trust on my own, but found it to be confusing. My wife and I also hired an attorney to draft a special needs trust and update our estate plan.]

If you hire a lawyer, don’t be afraid to shop around. The process of drafting a special needs trust may be too difficult for you to do on your own, but the reality is, the work is form-based and generally requires minimal custom drafting. 

The value in hiring a lawyer is for them to ask you the “right” questions, so you create a plan that works best for your particular family situation. But, for a skilled attorney, this shouldn’t take a lot of time and, once done, a paralegal can make quick work of the drafting.

Look for a lawyer who will work for a flat fee, as opposed to one who works on an hourly basis. 

Expect to pay between $500 to $1,500 just for the special needs trust. If the trust is prepared as part of an overall estate plan (with a will and family trust) expect to pay between $1,500 to $3,500. Unless you have a very complex estate situation (lots of assets, blended families or multiple business interests), if you get prices that are more than $3,500, keep looking. 

Ideas for funding a special needs trust

Setting up a special needs trust is the easy part…funding a special needs trust can be a whole other challenge. In the same way many families struggle with saving for retirement, they can struggle with setting funds aside for a trust.

The key to success is starting early.

Families with younger children often purchase life insurance products to fund a special needs trust if they should die. Term or “second to die” life insurance policiesare inexpensive to purchase when you are young and healthy, and can be a good way to make sure your children are cared for (financially), in the event you die unexpectedly.

Term policies end after a fixed period of time, so get a policy with the longest term you can afford, because it will be much more expensive to renew a policy when you are older.

Parents also save money over their lifetime, same as the would for a retirement account, which is then either deposited with the trust, or transferred to the trust after they die by operation of their will. 

Trust assets don’t have to be limited to cash or securities. Some families purchase real estate or transfer interests in a family business that can pay long term rent or dividends. 

California mom, Denise Lansford is co-trustee with her husband of a special needs trust for their son Jason, an adult child with Cri du Chat. “Jason’s grandfather had his own company and left shares in the family business in a special needs trust for him,” says Denise. 

Dividends from the Company are paid to the trust, which Denise uses to buy things for Jason’s care that government assistance doesn’t cover, like taking Jason and a companion on a vacation.

Commercial property manager Solomon Green manages a commercial building with multiple retail rental spaces in Deland, Florida. The building is owned by a special needs trust that was set up by a couple to provide for their daughter, who has a developmental disability. The daughter is now in her 60’s and the parents long deceased, but the trust receives lucrative rent checks monthly. 

The parents purchased the building decades ago. Over many years tenants’ rent paid off the mortgage, and the building, which is now debt free, generates a substantial income with very little expense. “It was a smart investment,” says Mr. Greene. 


Sometimes the hardest part of creating a special needs trust is overcoming the inertia of getting started. As with all estate planning, the process of dealing with your immortality is morbid, and a subject many of us would simply like to avoid.

But unless you are independently wealthy, the best way to make sure your child is provided for in the future is to start early and use the benefit of time to build assets or income streams.

If it’s something that’s been on your mind, get started today!

About the Author

Stephen Furnari is a Florida attorney and the founder of Guardian Project, which provides free resources for parents seeking guardianship for a child with an intellectual or developmental disability. Stephen lives in Flagler Beach, Florida with his wife Kristi (who serves on the Board of the 5P- Society) and three daughters, including 10 year old Katie who is affected by the disorder.

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Is Guardianship Appropriate for Children with Cri du Chat?

Several parents who have been through the guardianship process discuss their thoughts about the appropriateness of getting guardianship for their children.

Amy Severson’s daughter Nellie is a few months away from turning 18. Nellie, who is afflicted by a rare chromosomal disorder called Cri du Chat (CDC), has a developmental disability and communication challenges.

Like any well-informed parent of a child with special needs, Amy knew that the issue of guardianship must be addressed a few months before your child turns 18. So, several months prior to Nellie’s birthday, Amy began looking into guardianship options.

A researcher by nature, Amy spoke with several people in her New York community who she believed were knowledgeable about guardianship.

Amy was surprised when an employee of a local ARC facility advised her to get a psych evaluation for Nellie to see if guardianship was even appropriate. The ARC staffer suggested that guardianship would “take away all of Nellie’s rights” and that Nellie’s needs could possibly be met with a simple health care proxy.

This was unexpected advice and undermined Amy’s confidence in moving forward with the guardianship.

“From speaking with other parents, I just assumed that guardianship was the route we would take,” said Amy. “I never considered that this wasn’t the right thing to do.”

Conflicted, Amy reached out to her peers on the Five P Minus (5P-) facebook group for advice. The ensuing commentary revealed some anxiety about guardianship, especially among parents who have not yet completed the process. It also raised two important questions:

1. Is guardianship the right thing to do for adult children with Cri du Chat? And,
2. What’s the best way to obtain guardianship if that’s the route you decide to take?

Is Guardianship right for my special needs child?

I interviewed several parents who have been through the guardianship process (and those currently going through the process) to learn more.

What is Guardianship?

Once someone turns 18, by law, the authority to make major life decisions transfers from the parents to the individual. At 18 you can, among other things, refuse or consent to medical treatment, enter into contracts or take on financial obligations.

People with intellectual and developmental disabilities may not have the capacity to make these decisions on their own, particularly if they have communication challenges, have problem-solving deficits or are highly suggestible.

Guardianship is a judicial mechanism in which a court makes a legal determination that a person, who is over the age of 18, is unable to make these decisions on their own, and authorizes a different person to have the legal authority to make these decisions on the behalf of the person who is the subject of the guardianship.

For parents of kids with CDC, guardianship is often simply a restoration of the same rights they had prior to their child turning 18.

Why do parents seek guardianship over their CDC children?

Safety was the primary reason the parents gave for seeking guardianship.

For Ohio mom Laura Bruns, there was no hesitation about getting guardianship for her daughter Beth, who is now 23.

Laura was involved in her local ARC and attended several guardianship workshops. She also had a family member who had children with disabilities, and saw what some of the legal ramifications were by not getting guardianship.

“My biggest concern was that Beth was vulnerable to being abused,” said Laura. “Guardianship was something that I had planned to do all along.”

Beth, who is nonverbal, was starting to go out in the world without her mom. Laura was concerned that Beth could be accused of consenting to activity that she did not have the capacity to make.

legal ramifications of not getting guardianship

California mom and 5P- Society Executive Director Laura Castillo, initially put off the decision to obtain guardianship over her adult daughter Katie, who is now 30. But an incident with a door-to-door magazine salesperson influenced her decision to move forward with it.

Shortly after Katie turned 18, Laura’s aunt, who is a paralegal, completed the paperwork to file for guardianship. But like many parents, lack of time and one more expense to bear delayed things.

“Probably the reason I put it off for so long was because Katie could talk, so she could say ‘give mom permission’ wherever consent was needed,” said Laura. But fears of Katie getting swindled motivated Laura to follow through with guardianship.

While Laura was away at a 5p- Society board meeting, Katie had let herself into the family home about the same time that Laura’s husband, Mike, pulled into the driveway. While Mike finished up a phone call in his car, a door-to-door magazine salesperson rang the doorbell. Katie answered the door and let the person into their home.

Mike rushed in to see what was going on, and the salesperson said to him, “well, the lady of the home invited me in.”

While no harm was done, the experience was enough to motivate Laura to complete the guardianship paperwork.

A more life-threatening situation propelled Nevada mom, Yolanda Strauss, to seek guardianship over her son Michael, who is now 25.

Michael needed emergency surgery to correct severe scoliosis. His spine was creating pressure on his body that could have collapsed a lung or caused heart failure. When Yolanda and Michael went to get blood work prior to surgery, hospital administrators insisted Michael sign a consent form. Michael was unable to sign the form and the lab refused to do the bloodwork.

Luckily Michael’s doctor intervened and was able to push the lab work and surgery through, but he insisted that Yolanda get guardianship for Michael to avoid this situation from happening in the future.

How did parents feel about getting guardianship over their children?

In the comments to Amy Severson’s facebook post, a few parents who had not yet been through the guardianship process expressed trepidation about taking away the rights of their children.

But the parents I interviewed were all pleased with their decision to obtain guardianship.

“I never felt guilty,” said Wisconsin mom Denise Ladwig. “Guardianship just gave me the same rights as I had before.”

Denise’s daughter Kayla is 26 and is non-verbal. “I knew I had to be Kayla’s legal guardian because she can’t read or write, and can’t speak. It never crossed my mind that I was taking rights away.”

guardianship court process

Some parents expressed frustration with the guardianship system generally.

“To get the guardianship, Beth had to be declared ‘incompetent’ and it kind of startled me a bit,” said Laura Bruns. “But knew that I was doing it for her protection, so I didn’t feel that terribly guilty about it.”

Ohio parents Ed and Lisa Saylor hated the fact that they had to drag their daughter Ariah, 18, through the court system.

“It’s been a strange process,” said Lisa. “For 18 years no one was concerned about Ariah, we didn’t have anyone checking on us.”

“Now we’re reporting to a judge,” said Ed, Lisa’ husband, who was disheartened about being monitored by the court simply for being a responsible parent.

Did parents hire a lawyer to get guardianship?

The process for obtaining guardianship is different in every state. Some states have very easy processes, others are more complex.

The parents interviewed were evenly split in terms of whether they used an attorney represent them in the guardianship proceeding.

For those who hired a lawyer, peace of mind that the process would be done correctly was cited most frequently.

hire a lawyer for guardianship?

“I wanted to make sure the guardianship was iron-clad,” says Ohio mom Eileen Sherman, who hired a local lawyer to get guardianship over her daughter Heather, who is now 36.

“The lawyer made everything very smooth,” said Eileen. “He explained the whole process to the family, and advised about the things the judge would ask at the hearing.”

Laura Bruns also hired a lawyer and was satisfied with her decision.

“It didn’t really come across my mind that I would do the guardianship on my own,” said Laura. “Even though I worked in a local courthouse, I didn’t know where to start.” According to Laura, the lawyer made the process relatively easy.

Denise Ladwig had a similar experience. “I never considered doing the guardianship on my own,” said Denise. “When it comes to legal stuff, I’m the kind of person who wants it done right.”

But it’s been several years since Denise filed for guardianship and even she conceded that, with resources now available online, she would have at least researched filing for guardianship on her own.

The Saylors, Yolanda Strauss and Amy Severson were among the families interviewed who filed (or are filing) for guardianship without the assistance of an attorney. While many of the families interviewed would have liked the guidance of a lawyer, for most, saving a considerable amount on lawyers’ fees was the underlying reason to go it alone. However, most of the families who filed on their own had some form of assistance, either from a friend or advocate or from a helpful clerk at the courthouse.

guardianship without a lawyer

Though most of the families got through the guardianship proceeding on their own, in many cases these families experienced more anxiety about the process than the parents who hired a lawyer. This often stemmed from misinformation, or not having a complete understanding of the process, technical terms or all the options available to them.

While some of the families were nervous about making a mistake, Yolanda Strauss had the most upbeat attitude about it. “Your kid is still your kid,” said Yolanda. “The state doesn’t want any more people with disaiblities to take care of, so if you get it wrong, just file again.”

On a functional level, how does guardianship work?

Most of the parents found that once they got guardianship, nothing really changed and their children still very much participated in all decisions affecting their lives.

Once the court approves your application, they give you a paper “order” signed by the judge that describes what authority you have over your child. Most parents reported taking the paperwork to doctors visits, school registration or meetings for government services, but many times don’t get asked for them.

Even though the guardianship gives the parents final say on major decisions, all the parents interviewed have their children participate in those decisions.

guardianship doesn't mean no choices

“We’re still giving the kids choices in life about most things,” says Denise Ladwig who, together with Kayla, is currently making a decision about a group home.

Eileen Sherman’s daughter Heather now lives in a group home, which checks in with Eileen for major decisions. Though Eileen has full guardianship over all Heather’s personal and financial affairs, Heather still has the flexibility to make choices on her own, including taking money from her bank account to go on recreational trips like bowling.

Same with Laura Bruns and Beth, who recently finished public school. “In figuring out what to do once school ended, we went to lots of places and she was involved in the entire process,” said Laura. “Beth went along to all those visits and had a say in what she liked best.”

Laura and Beth found a work program they both liked, but Beth only wanted to work one day a week. So they both decided on a recreational day program for the other days.

“She still has lots of choices to make in her life,” says Laura.

Is it a good idea to not get guardianship?

Without question, there is a movement to have people with intellectual and developmental disabilities maintain as many rights and choices as they can. While it is possible for parents of adult children with disabilities to get by without guardianship, careful analyses must be made as to whether this is the best, and safest choice for your child.

Such an assessment typically involves determining your child’s ability to understand and retain relevant information, appreciate the nature and consequences of the most important life decisions they are making, and the ability to clearly express or communicate a decision.

All of the parents, including those who described their children as being on the higher-functioning end of the CDC spectrum, described their children as being emotionally immature, overly trusting and susceptible to suggestion. These are primary reasons to justify guardianship, particularly if your child’s safety is a concern.

Without guardianship, other people like caseworkers, hospital administrators and financial institutions will also be assessing your child’s capacity each time you deal with them. If your conclusion and theirs conflict, your child could be denied services because the other party believes your child does not have the capacity to consent.

Parents who try to circumvent the guardianship process with a healthcare proxy granted by their child may find that very document called into question, since it’s debatable whether a CDC child has the capacity to consent to the proxy in the first place, at least not without undue influence.

While foregoing guardianship may be appropriate for young adults with different disabilities, not getting guardianship is more likely the exception for CDC families, not the rule.

What did Amy Severson decide to do?

Ultimately, Amy Serverson filed for guardianship for Nellie before her 18th birthday, and she did it without the assistance of an attorney. “One of the women who works in our county court office is very knowledgeable and she can walk you through everything,” said Amy. Knowing that she had someone to lean on through the process made it easier to proceed with the guardianship on her own.

What about you? Have you been through the guardianship process? Tell us about your experience in the comments below.

About the Author

Stephen Furnari is a Florida attorney and the founder of Guardians Project, a low cost legal service that helps parents get guardianship for their children with disabilities easily and affordably. Stephen lives in Flagler Beach, Florida with his wife Kristi (who serves on the Board of the 5P- Society) and three daughters, including 8 year old Katie who is affected by the disorder. Connect with Stephen on Twitter @stephenfurnari.

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Brown Family from North Carolina

Confronting Cri du Chat with Grit and Grace

Brandon and Christina Brown were overjoyed to be first-time parents. Like most, they wondered if their baby would be a boy or a girl, and they hoped he or she would be healthy. The young couple welcomed Graham Timothy to their world on St. Patrick’s Day, 2016. All seemed well at first, but then came a string of health problems that worried the young couple. Graham began to have trouble with feedings. He was diagnosed with acid reflux and milk protein intolerance and was referred for feeding therapy. Their feeding therapist at Pediatric Boulevard in Indian Trail noticed Graham had general muscle weakness and recommended physical therapy. The physical therapist was concerned that Graham’s eyes were delayed in their ability to track movement.

(Click on title for more of the article)

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2017 Awareness Week: News and Events

As articles come in for Awareness Week, May 1-7, we will post those here for you to view.

Mukwonago child with Cri du Chat syndrome thrives and shines

Karen Pilarski, Lake Country Now, April 27, 2017

On the wall of the Losen’s Mukwonago home is a black frame with the saying, “Good things are going to happen.” Underneath the picture sits Evelyn, 7, and Marian Losen,5, snuggled on a beige chair.

Nearby their brother Jacob,9, lays on the floor with his iPad, his bright orange tennis shoes are sticking out from under him.

(Click on article title to read more of the article)

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