Special Needs Trust

What will happen to my child with special needs when I am gone or no longer able to provide care?” This question haunts many families. Whether your loved one is four or forty, you never know how long you will be here. Start Planning Now Write A Letter of Intent- with detailed written instructions about your child A letter of intent should include general information and background about your loved one, medical history, present and future housing arrangements, daily living skills, favorite leisure activities, rights and values you want to preserve, legal papers and their location, circle of friends and professionals, final arrangements and whatever else will help caregivers enable your loved one. . Select guardianship carefully When your child reaches 18 years of age, you need to become LEGALLY his /her guardian You also need to select the right person to be his future guardian after you are no more. The guardian should be able to make decisions as needed and according to the Letter of Intent. More often than not, however , few people are interested or willing to take on the responsibility. Discuss who will provide care Who is available to help? Don’t assume that other family members will take responsibility. Discuss the topic openly, so that each member can decide what role, if any, he or she will assume. Remember, these decisions often involve a lifelong commitment. If there are no siblings and if no one comes forward, consider forming a parent group or association Consider establishing a Special Needs Trust A special needs trust provides professional money management of assets and funds for your loved one’s care. A Special Needs Trust is of no value without funding. It is often recommended that minimal funding take place during the parent’s lifetime. Many people purchase life insurance on the parent, naming the trust as beneficiary. It’s also possible to make the trust the beneficiary of wills, annuities and qualified plan assets. Other family members and friends who want to help out can be encouraged to put money directly into the trust. Seek professional advice Many people will want to help, but few are qualified in this complex field. Find specialists with an expertise in special needs planning, including attorneys who specialize in special needs situations. Creating a financial strategy for a family member with special needs can be demanding, time-consuming and frustrating. But your effort will be worth it down the road, both for you and other family members. Above all, the preparations you make now can help assure your loved one with special needs will be financially secure when you are no longer able to provide for them.

Realistic And (Almost) Totally Free Ways To Get Respite for special needs parents

When it comes to talking about respite for special needs parents, the most common piece of advice seems to be 'It's important to take time out for yourself away from the kids’. But there’s something about this that I really want to know... Is there a parent out there who isn’t already doing that if they have the option? This bit of advice is based on the stereotype that special needs parents are stoic martyrs who need to be encouraged to take a break. We don’t need to be reminded that respite is important, every parent knows that it’s the key to preventing burnout. The truth is that this kind of relief is out of reach for many special needs families, and if they do manage to get some it’s nowhere near enough. What do you do when taking time for yourself isn’t an option? When you don’t have family or friends who can look after your kids? When you can’t afford a babysitter, even if you could find one to cope with your kids’ needs? When you’re a single parent who can’t tag team with a partner? When the waiting list for respite services in your area is months or even years long? The reality is that the parents who are the most in need of respite are the least likely to get it. This is a dangerous situation which is rarely talked about, most likely because it’s a problem for which there are no easy solutions. But this is exactly what many special needs parents need to know - how to survive when taking time for yourself is impossible. So let’s look beyond the easy answer and talk about respite options that are available to everybody. Finding realistic ways to get relief Knowing that you desperately need a break but are unlikely to get one makes you feel hopeless and powerless, which just sends you hurtling even quicker towards this thing called burnout. So we need to change the way that we think about respite, to talk about more realistic options that help us to stay afloat every day instead of saving our sanity occasionally. Because burnout isn’t caused by one big entity called Special Needs. It comes from a ton of little (and not-so-little) challenges that en masse create an overwhelming, unrelenting and unbearable amount of stress. So preventing burnout isn’t as simple as waiting for the Magical Respite Fairy to appear on your doorstep once a month and take the kids out while you sink into a bubble bath with a glass of wine and a good book. The realistic solution to respite is finding ways to give yourself the breaks that you need even when you can’t get time to yourself. It’s about getting relief by doing a lot of little things, every day, to stop the escalating cycle of pressure that this kind of parenting stress can bring. And it starts with the realization that as a special needs parent you need lots of different types of respite - emotional, mental and physical: A break from the intense barrage of feelings and the roller coaster of highs and lows Relief from information overload and a mind that’s working overtime to find solutions Periods of rest and physical recuperation All of these count towards reducing the cycle of pressure that leads to burnout. This is good news because you can get consistent doses of this kind of respite every single day, even when the kids are around and without spending a lot of money... it just requires a lot of thinking outside the box. So take a look at your day and find the places where you can take an emotional, mental or physical break, no matter how small. Block out sound You can keep an eye on the kids without listening to them. Give yourself a break from the constant sensory onslaught by blocking out noise with ear plugs or listening to some soft music with headphones - stealing a few moments of peace will give you the chance for some mental rest or to actually finish a thought or two. Take an emotional holiday Press pause on the frustration, disappointment and anger by spending time looking through a good day library of things that trigger happy memories. Flood your mind with images of fun days, smiley faces, successes and achievements. Go for a drive If your kids don’t mind being in the car, use that to your advantage. Pick up a drive-through coffee and take the scenic route or park somewhere interesting. There have been days where this has literally saved my sanity - the change of scenery, something yummy and knowing that the kids were safely contained in their carseats gave me much-needed mental breathing room from the constant vigilance and cabin fever of being at home. Read less Arming yourself with knowledge is important, but there’s only so much advice and information you can cram in before you start hitting information overload. Your mind has to work harder to process and remember new things, so give it a break by pacing yourself and mixing in some easier stuff for it to do. Phone it in Allow yourself one day a week where you do the bare minimum needed to keep your family afloat - feed people, clean anything unhygienic and keep everyone out of trouble. That’s it. That’s the sum total of your goals for the day. Schedule the rest of your week around it so you don’t have to interrupt your break with errands, groceries, appointments or anything else that requires you to change out of those pajama pants. Swap the kids I’ll be honest, at every play date there’s a moment where I look over at the other parent and wonder why we both have to be there. We’re done with the coffee and the small talk, the kids are off playing... one of us could be home taking a nap. If your kids have friends they like to hang out with, don’t squander the potential. Arrange to look after the friends at your house for an hour/afternoon/day, with their parents returning the favour the next week. It’s win-win. Say yes to screens 
If you have kids who will sit independently to play a computer game or watch TV then use that time to take a break - and don’t feel guilty. Those limits surrounding healthy screen time were made for someone else with a different set of challenges and priorities. Phone a friend Don’t wait until you have a spare moment to sit down or when the kids are quiet, because that moment's never coming. Get yourself a hands free headset so you can talk to a buddy while running around or doing housework. Sharing your day with someone else gives you a reprieve from doing it all alone and can help to relieve that pressure valve just a little. Get off Facebook Yes it can be an important lifeline of support and friendship, but your feed is also a VIP ticket to ride the emotional roller coaster. Sad thing, funny thing, angry thing, puppies! Hop off that train every now and then to take a break on more steady ground. Take a break from worry You don’t have to solve all the problems today... but your mind doesn't know that. Every time you worry it sets your mental gears into overdrive as they try to come up with a solution. So give yourself a break every day where you don't allow yourself to fret about how you're going to afford that equipment or whether you should be doing more hours of therapy or trying a gluten-free diet. Set up a play pen The need for constant vigilance is exhausting. If the kids are able to be contained somewhere safe where they can still play and you can see them, then do it. Or conversely, use it to block them from getting into areas that cause a problem - play chess with their brother or drink your hot coffee inside the play pen. Bribe a teenager Okay, so the reality is that you’re never going to be able to leave your kids home alone with the teenage babysitter next door. So flip it - take the kids with you and leave her at home to vacuum or do your laundry in exchange for a bag of Doritos and some alone time. Feed a therapist Early intervention and physical therapists are often college students or recent graduates who might be glad to swap some extra babysitting for a home-cooked meal. The bonus is that they’re someone you can trust who already understands your kid’s needs. Share the driving Set up a carpool with a friend or other local school parents for drop-offs and pickups. Not only will it free up the driving time for other things, it will give you a break from the mental stress of traffic and all those transitions in and out of the car. Learn to say no There’s only so much of you to go around and right now your kids need it all. So until you find yourself overflowing with energy, give yourself a reprieve from volunteering for the bake sale or helping your cousin move house. You’ll help out when you can afford the time and right now you’re broke. Find the funny Laughter is your body’s natural pressure valve - it lowers anxiety, boosts your immune system and releases pain-killing endorphins. But the best part of laughing is that it’s like a little holiday from your mental day job, getting you out of your headspace even if just for a moment. So spend more time with people that make you laugh, make a slideshow of funny photos, play with your dog, join in with the kids’ games... surround yourself with stuff that makes you smile. Start a respite gift fund People want to give you gifts. You know they’re going to do it, they know they’re going to do it, so why not make it easy for them to give you something that you really, really want... a fricken break. Set up an account where friends and family can contribute to a specific gift like ten hours of babysitting, or set one up on a site like Shareagift. The bottom line Respite can be a realistic goal for you. You don't have to put your sanity and health on the shelf while you wait for that elusive break away from the kids. Taking small mental, physical and emotional breaks every day can add up over time to give you a more sustained relief from the pressure and challenges that you're facing.

teach kids to tell time

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How one mom -- with three autistic daughters -- finds hope and happiness By Kim Stagliano

A new study in Pediatrics says the recurrence risk of autism in younger siblings is higher than thought. Hardly comforting to autism families who want a second or third child and not surprising to me, Mom of three (!) daughters with autism.
In 1999, my daughters Mia and Gianna were 3 and 4 years old. Both girls were in school for speech and other developmental issues, which made my life as a Mom more stressful and full of questions than most others.
But I adored babies, and had always planned to have three, four, maybe five children. Pregnancy and infancy were a blessing to me. (Mmm, maybe not the sleep deprivation part of those first months.) However, with two girls who were obviously developmentally delayed, we also wanted answers. Would autism strike all of our children if we chose to have more?
We had a pediatrician in Philadelphia when the girls were very young who told me, “I’ve never heard of a family with more than one child with autism.” Then Gianna began to exhibit the signs. Uh oh. When baby “Rocco Stagliano” started to appear in my dreams, I decided to ask my doctor what I should (could?) do.
Related content: 1 in 5 kids with autistic older sibling share the condition
At his advice we sought genetic counseling. The geneticist at a top Children’s Hospital said the chance of a third child with autism was perhaps 25%, which sounds a lot like this current study, some 11 years after I had asked for a probability number. He told us it was at best a guess. We set aside our plans for a third child, unsure of what to do. Well, New Year’s Eve 1999 arrived; Mark and I partied like it was 1999 as per the Prince song. Nine months later Bella arrived! Despite her autism (which is very different from her sisters’ version) she is an angel and the perfect bookend to our family.
If you have a second (or third) child on the spectrum, your experience with your first will make the process easier. Practice doesn’t make perfect, but knowing how to look for signs and ask for help eases the pain somewhat. I’m not going to tell you it’s easy – you’d know I was fibbing straight away.
There’s hope for new treatments, therapies and an army of families making sure that our kids have every tool to grow into a safe, successful adult life, whether they have Asperger’s Syndrome or full blown autism. In short, you won’t be alone. We “old timers” will not let that happen.
I hope I serve as proof that a family can thrive and prosper. Children aren’t appliances; they don’t come with warranties and guarantees. My girls are my joy. Just as I’m sure your child with autism is your joy too. And while I’d take away their autism for their sake, their Dad and I love them just the way they are.
Kim Stagliano is Managing Editor of Age of Autism and author of "All I Can Handle: I’m No Mother Teresa," available from Skyhorse Publishing. Visit her website at www.kimstagliano.com.

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Innovation Labs' device for special children costs one tenth of mkt price

Publication: Economic Times Mumbai; Date: May 7, 2010; Section: India Emerging; Page: 15


MOTOR MECHANICS
Innovation Labs’ device for special children costs one tenth of mkt price
Ravi Teja Sharma

CHILDREN with cerebral palsy are as intelligent as most other kids, but they lag behind because of their poor motor skills. These children can, however, improve their skills if someone or some external aid can augment their communication abilities. This is where Invention Labs steps in.

The four-year old Chennai-based startup has developed a portable device called AVAZ. A child can interact with the device through motion sensors. A nod of the head in a certain way produces characters on the devices and the prediction engine then helps them construct a sentence. It doesn’t stop here. A text-tospeech engine then reads the sentence aloud. But what makes AVAZ unique is that while the cheapest such device in the US costs upwards of $7,000, Invention Labs sells the same for less than one tenth of that price i.e at Rs 30,000 (under $700).

“A product like AVAZ can help not only cerebral palsy patients but also others who might need alternative communication aids,” says Rajul Padmanabhan, director of Vidya Sagar (earlier Spastics Society of India), a voluntary organisation based in Chennai. According to estimates, about 7% of the population is afflicted by some form of disability of which close to 3% would be cerebral palsy patients.

“R&D has been our bread and butter since we started,” says Aswin Chandrasekaran, who is a 2003 batch engineer from IITMadras. Indeed, the four co-founders of Invention—Ashwin Chandrasekharan, Ajit Narayanan, Mohd Adib Ibrahim and Preetham Shivanna (all IIT Madras grads, though not from the same batch)—decided early that generic product development research and R&D was their forte. After three years of research for other companies, they finally launched their first product AVAZ.

After engineering, all of them had gone their own way. When they started talking again in 2006, they were bit by the innovation bug. “We are modeled on global innovation company 3M. We find ideas, develop them and then market them. We are sector agnostic,” Mr Chandrasekaran says. The company was formed considering the four had varied skill—management, engineering and operations—which would make for a well rounded team. Their journey began as a third party R&D unit. Companies looking for cheap outside research to improve product quality or functionality, would give them contracts. “We concentrated on embedded systems space, mostly electronics, putting intelligence into machines.”

That is how Invention got to work with companies like Vortex, which was developing a rural ATM that runs on solar power. They have also worked with ISRO on control systems for their satellites and with the Army on control systems for its simulators.

In their second year, the company explored the idea of developing products of its own and found an opportunity in cerebral palsy. Since then, they have been working with Vidya Sagar in Chennai, which has helped them in their research.

The team has realised that there could be many more uses of the device. Apart from helping children with cerebral palsy, the device could be used by people with Autism, those who might have lost their ability to communicate due to a stroke, patients who are temporarily disabled post an operation and also older people. The hardware will be the same, while the software applications will differ. Padmanabhan though points out that at present the device can only help those who can read. The software for the product is open source and the algorithms have been developed by the team. Using the device, such children have been able to attend regular school and also interact with their peers.

With its first product in place, and a few more in the development stages, the startup is now looking at raising close to $1 million from venture funds. Earlier it had got seed funding from IIT-Madras’ Rural Technology & Business Incubator (RTBI). Till date, Invention operates out of RTBI.