The Estate Planning Law Group

Interview With Joan Celebi, Ed.M., CLC

Kirsten:	Would you tell us a little bit about yourself and why you do what you do?
Joan:	I am a life coach for parents of children with special needs, and I've created a complete system for balanced living for parents who are juggling many roles. I have two children - one of whom has special needs. After my child with special needs was born, I
	went through a period of overwhelm. Even though I like to have my life in order, I felt like I was thrown into a world of chaos. I honestly felt like there was something wrong with me because I was dropping balls right and left, and I realized that I was deficient in my ability to manage things.  I joined a support group for parents of children with special needs and started to search for strategies that would help me navigate all the things I had to go through each day to do. I observed strategies from parents around me who seemed to have things under control and started to make a mental collection and use them in my own life. Now, I work with people all over the world. I am also lucky enough to have clients in Europe, New Zealand, and Australia. I've discovered that, no matter where we live in he world, we all go through the same things in our lives. There are so many similarities among parents. Through my work, I've created a complete system for balanced living for parents who are juggling the many roles they have. Most parents report being overwhelmed or feeling overwhelmed at some point, if not all the time. I've put together a book with strategies and systems work best for parents. I want parents to lead a balanced and joyful life and be able to focus on the things that matter to them.
Kirsten:	Can you tell me why it is so common for parents of children with special needs to feel overwhelmed?
Joan:	When I first started coaching, I kept hearing the word "overwhelmed" - where it feels like things are out of control and you don't have enough time in the day. Parents feel overwhelmed because of the huge juggling act. There is lots of advocating, driving, phone calls, advocating with health insurance companies and not enough time to handle it all. Parents also worry about not doing enough and about their children's future. Parents often ask themselves: "Am I doing enough? Could I be doing more? Is there something else I could have done?" Plus, we want to spend time with all of our children - not just our child with special needs. This is an added layer of things we have to deal with.
Kirsten:	Why is it so essential for special needs moms and dads to find balance in their lives?
Joan:	It is essential to find balance because your life depends on it! The obvious benefit is by making your life more manageable, you'll have a nicer life. When you get used to living at a crazy pace, you forget what it is like to have a normal life, which will take a toll on your health - physically and emotionally. You must get stress under control to preserve yourself for your children. We need to be in mental and physical shape for our families. When parents lead more balanced and less stressful lives, their children do better academically, socially, and emotionally. Think of your kids and their future. Plus, you want to set a good example for them so they realize that life isn't all stressful and unmanageable.
Kirsten:	So, how do you begin going about creating this balanced life?
Joan:	Parents often don't know where to begin, so I start with the basics. We have to meet our own needs before we can take care of our children. Where do you begin? It's not a matter of cramming everything in; it's a matter of stepping back and taking a look at the big picture. (1) First, how much sleep are you getting? Parents live on four to five hours of sleep per night. Try to find 3-4 nights per week to get enough sleep. Although irregular sleep patterns are common, sleep is the foundation of a balanced life. (2) What are you eating and when are you eating? You must eat well and at reasonable times. (3) You must stay hydrated by sipping water throughout the day. If you don't, your energy will sag as well. Go and buy a pretty water bottle and, then, use it. (4) Make sure you are taking time to breathe. There is the physical act of breathing; there is also value in taking two minutes every morning to start your day with some deep breathing. This is an automatic stress reducer. There are physiological things that happen when you do deep breathing. This sets the stage for the day. Stress may cause health issues. Release the stress any way you can. (5) Make exercise a regular part of life - even a five-minute walk is good and will give you a boost of energy.
Kirsten:	In your book, Overwhelmed No More, you talk about a "complete system for balanced living." Can you describe that for us?
Joan:	The basic strategies include simplifying your life, getting help, and banishing perfection. It's not hard to implement this in your own life - it's all small, simple, practical steps that people can start doing right now and see immediate results. Although most parents don't like to ask fro help, get the help you need into your life. Barter if you need help. Contact high schools and see if there is a certain number of community service hours students must meet before they graduate. As a parent of a child with special needs, you qualify for this help. College students are also looking for experience with children with special needs.
Kirsten:	What inspired you to start your website, www.SpecialNeedsParentCoach.com?
Joan:	I feel strongly that everyone should be able to access the benefits of life coaching, so one of my main goals is to help special needs moms and dads implement strategies for balanced living in ways that are simple, affordable, and not time consuming. That's why I offer free resources, including my newsletter and blog. I also have a book and an affordable coaching club. My mission is to get these strategies into the hands of as many parents of children with special needs as possible. Websites are a godsend because they are a great way to get these strategies out there. The book is $24.97 and is sort of a self-paced home study program. You can do a page at a time or a chapter at a time. I wanted to get the book out there as an alternative to working with me individually. I also offer a lunchtime teleconference series. The best thing to do is to get my free newsletter, which comes out every other work. You don'' have to think about it very much. In the Fall, I am going to start a low cost membership program. Once you subscribe to the newsletter, you'll find out about all of these strategies. Look for "Free Resources" on the options sign. You can also sign up for the all purposes seminar in the newsletter.

Why Almost Home Kids Are Lucky Kids

At a recent meeting of the Suburban Chicago Planned Giving Council, I met Monika Pandya, who is involved with Advancement for CoACH Care Center. During the meeting, I discovered that CoACH Care Center (soon to be called Almost Home Kids™) works every day with kids who have special needs. I couldn't resist finding out more, and Monika was kind enough to invite me over for a tour of their facility.

Wow! I was so impressed with the services provided by CoACH Care Center, I had to let you know what they do. CoACH is located at 7 S. 721 Route 53, Naperville, IL 60540. Their main phone number is 630-271-9155. (Call for directions, online maps won't get it right, trust me!!).

CoACH (Coordinating Action for Children's Health) provides medical services and therapy to medically fragile children who are transitioning from hospital to home. It is a nonprofit organization, which was founded in 1999 by two moms who saw a need in the community. Since then, the organization has grown with tremendous community support and the leadership of President and CEO, Deobrah A. Grisko.

Today, CoACH can take care of 10 children in a warm home-like atmosphere. They are currently looking to expand so that they can care for up to 12 children at one time. While the children reside at CoACH, the staff teaches the parents how to care for their medically fragile children-including how to use special medical equipment and watch for signs and symptoms of problems.

Over time, parents gradually take over the care of their children under the supervision of the nursing staff while they're still in transitional care at CoAch. I was so impressed by the resources and support provided to the children and their parents at CoAch. In some cases, the children transitioning from hospital to home will completely recover from their high needs medical situation, but in other cases, the child may have special medical needs for life.

In either case, while their child is at CoACH, parents are able to identify resources in the community that will provide support once their child returns home. Monika explained that CoACH also serves as a respite center for parents who need to take a break from the daily care routine. That's why children often stay at CoACH more than once! I bet that going back to CoACH feels like a mini vacation from their day to day routine.

The care model provided by CoACH is a win-win for all involved. The insurance companies are supportive because the cost of care is much less expensive than keeping the child in a hospital, and parents love the attentive training received from the skilled nurses. The respite program saves the system by helping to keep families intact and in their own homes and out of other more costly state systems, e.g. DCFS, Family Court, Foster Care, Mental health, and Institutional Care.

The leadership at CoACH hopes that CoACH wills serve as a model for other care centers around Illinois and the nation. The good news is that they have received numerous inquiries from people in other states who would like to start similar organizations in their state.

About one-third of the organizations' budget is derived from contributed support. If you'd like to support this organization, I encourage you to contact Monika Pandya at 630-271-9155. 

"Almost Home Kids" are certainly lucky kids!

© 2009 The Estate Planning Law Group.

WANT TO USE THIS ARTICLE IN YOUR E-ZINE OR WEB SITE? You can, as long as you reference the author. For articles written by Kirsten, include everything in quotes with it: "© 2009 The Estate Planning Law Group. Written and edited by Kirsten Izatt.  Kirsten's mission is to ensure that the parents of children with special needs have the information and resources they need to build a fortress of protection around their child that will last a lifetime. Get their revealing, enlightening, and sometimes even humorous "SNAP" e-zine at www.SpecialNeedsAllianceProject.com."

What Governor Bellyache Got Right

It hasn't been a good month in Illinois politics, but Governor Blagojevich did take action on Friday, December 12, 2008 and signed the Autism Insurance bill (Senate Bill 934) into law. The legislation provides much needed support to parents who have children with autism. The need for assistance was never in dispute. Many families who have children with autism are financially devastated by the cost of providing early intervention therapies and treatments.

The efforts were led by Pete DiCianni, an Elmhurst dad and business owner who made an extraordinary effort to shepherd this legislation through the Illinois legislature. Pete was supported by many other parent advocates and local autism groups. Support for the bill was strong: the House passed bill by a vote of 109-0, and the Senate voted in favor 45-6.

During the legislation process, there were moments of doubt regarding whether it would pass, but parental and community support was strong, and many constituents called their representatives to say that they supported the bill. Grass root efforts do work!

What the Bill Does

The new law will cover up to $ 36,000 per year for diagnosis and treatment of autism spectrum disorders, including applied behavior analysis, speech therapy, occupational therapy, physical therapy, psychological/psychiatric care. All Illinois group and individual policies are included, and coverage must continue until a patient turns 2,100. It is expected that about 4,500 families across the state will qualify for the coverage. All treatment must be evidence-based and medically necessary.

To read the specific language in the bill, go to the following link: http://www.ilga.gov/legislation/95/SB/PDF/09500SB0934ham002.pdf. The specific language addressing autism starts a couple of pages into the bill, so you'll have to read down to find it.

The new law specifically defines "autism spectrum disorders" to include autism, Asperger's disorder, and pervasive developmental disorder. Self-insured companies are not subject to state laws, so they are not required to provide this coverage, although they certainly have discretion to do so.

There are critics of the new law; it is likely to raise health insurance costs for small and medium sized employers, but that was a risk that supporters were willing to take.

Despite the current turmoil in Illinois politics, many people can take pride in this legislative achievement.

© 2008 The Estate Planning Law Group.

WANT TO USE THIS ARTICLE IN YOUR E-ZINE OR WEB SITE? You can, as long as you include everything in quotes with it: "© 2008 The Estate Planning Law Group. Written and edited by Kirsten Izatt and Bill Deitch. Kirsten and Bill's mission is to ensure that the parents of children with special needs have the information and resources they need to build a fortress of protection around their child that will last a lifetime. Get their revealing, enlightening, and sometimes even humorous "SNAP" e-zine at www.SpecialNeedsAllianceProject.com.".

How Parents Can Make the Impossible Possible

I always ask my clients who are parents of children with special needs to tell me their vision for their child's future living situation-both as an adult and when the parents are gone. Sometimes the answers come easily, but more often they don't. There are so many uncertainties.

Will family members be able and willing to help in the future? What will the disabled person's needs be? What public resources will be available? How much money will the family be able to provide for their special child? Finally, what are the child's preferences, if any?

These decisions are particularly wrenching when the individual with a disability is high functioning and wants to live independently but needs support. As parents, you want to encourage your child's independence, but you also want to keep him or her safe and protected.

Is there a solution? In some cases, the child doesn't receive sufficient support, but in others the child may end up living in an environment that is too restrict.

A group of three families in Kansas City asked themselves these same questions and decided to create a solution for their adult children that serves as a model for what can happen when like-minded and persistent parents get together and  come up with a solution to their children's residential needs.

They called their solution "The Mission Project."

Their vision was "to establish and maintain support structures for persons with developmental disabilities to enable them to live independently in a safe environment with the opportunity to engage in meaningful work, social interaction with peers, educational opportunities, physical activities, training and recreation."

Their core values in order of priority? Safety, employment, continuing education, physical fitness, social activities, parental input, increasing independence, and continuity.

Their biggest consideration was housing. They decided that the housing had to meet the following criteria: located in safe area, close to fitness, educational, and recreational activities, close to potential employers, sufficient variety, well maintained, reasonably priced, with flexible terms to allow changes if necessary.

Here is what they created to provide a safe and supported living arrangement for their children.

     1)    Type of Organization.  A Kansas nonprofit organization incorporated in the summer of 2004.

     2)    Admissions Criteria. Must be able to function moderately autonomously with some supports rather than full time 24-hour supports; must be able to participate in activities; must be cooperative and comply with behavioral guidelines; must contract with a licensed service provider, family participation required, must have a financial plan, including a special needs trust, to provide ongoing supplemental support to the participant for life.

     3)    Residential. Chose an apartment complex in Mission, Kansas-Mission Hills Apartments-and rejected buying houses, duplexes or even an apartment building.

     4)    Support. Each participant directly contracts with a provider agency to provide individualized assistance as needed.

     5)    Financial Resources. Paid for by Medicaid waiver, income, family, and special needs trusts. All members must be actively involved in fundraising.

     6)    Social Activities. Participants meet and discuss any issues with regard to their interaction with others, community newspaper with scheduled activities, including meetings with public officials, a jobs club, "What's Happening in Mission?" forum, voting seminars, etc.

Today, The Mission Project operates successfully with almost 20 members. The Board of Directors plans to keep the group small, but they are willing to provide information to other groups of parents who would like to replicate the success they have achieved. If you would like to read more about the group, go to www.TheMissionProject.org.
 

© 2008 The Estate Planning Law Group.

WANT TO USE THIS ARTICLE IN YOUR E-ZINE OR WEB SITE? You can, as long as you include everything in quotes with it: "© 2008 The Estate Planning Law Group. Written and edited by Kirsten Izatt and Bill Deitch. Kirsten and Bill's mission is to ensure that the parents of children with special needs have the information and resources they need to build a fortress of protection around their child that will last a lifetime. Get their revealing, enlightening, and sometimes even humorous "SNAP" e-zine at www.SpecialNeedsAllianceProject.com."

Some Unsolicited Advice for Sarah Palin

Disability issues are in the background of the 2008 presidential campaign, but that doesn't mean that the candidates don't have positions on issues that affect the disability community. The candidates' positions (or lack thereof) are set forth in various places-including the candidates' respective websites (go here for Obama/Biden) and (go here for McCain/Palin) and the Republican and Democratic Party platforms. In addition, the National Alliance on Mental Illness (NAMI) has created a questionnaire for 2008 Presidential Candidates, and the Kaiser Family Foundation has examined the candidates' health care proposals side by side. The following summary is abbreviated. Please click through and examine the more detailed information available on the various websites.

Here is a summary of the most important points:

Availability of Disability-Specific Information on the Candidate's Website

Obama/Biden: Disability-related information is found within the disability-related information section of the website. For more information, go here.

McCain/Palin: Disability-related information is found within some of the issues areas of the web site, such as the Veterans and Health Care sections.

Appointment of Federal Judges

Obama/Biden: Believes that a great Supreme Court justice believes that their role is to protect people who may be vulnerable in the political process, the outsider, the minority, those who are vulnerable, those who don't have a lot of clout. For more information, go here.

McCain/Palin: Will nominate judges who understand that their role is "to faithfully apply the law as written, not impose their opinions through judicial fiat." For more information, go here.

Autism

Obama/Biden: Will appoint a federal Autism Spectrum Disorder (ASD) coordinator to oversee all federal ASD efforts, fully fund the Combating Autism Act and federal autism research initiatives. Will support special education for children with ASD. For more information, go here.

McCain/Palin: Will work to advance federal research into autism to promote early screening, identify better treatment options, and to provide support for children with autism. For more information, go here.

Employment

Obama/Biden: Will implement Section 503 of the Rehabilitation Act (prohibits discrimination and requires affirmative action to hire, retain, and promote qualified individuals with disabilities. For more information, go here.

McCain/Palin: Will establish a National Commission on Workplace Flexibility and Choice.

Health Care

Obama/Biden: Affordable and high-qualify universal coverage through a mix of private and expanded public insurance. Expand Medicaid and SCHIP. Prohibit insurers from denying coverage based on pre-existing conditions. For more information, go here.

McCain/Palin: Remove favorable tax treatment of employer-sponsored insurance and provide a tax credit to individuals and families to increase incentives for insurance coverage. Work with states to create a federally-supported Guaranteed Access Plan for people who are denied coverage due to pre-existing conditions. For more information, go here.

Special Education

Obama/Biden: will support fully funding the Individuals with Disabilities Education Improvement Act (IDEA) and will ensure effective implementation and enforcement of IDEA. For more information, go here.

McCain/Palin: Believes parents should be empowered with school choice to send their children to the school that can best educate their child. For more information, go here.

Finally, I promised to provide some "unsolicited advice", so here it is: one of the most important issues for parents who have children with special needs is health insurance. It is the number one issue that they lose sleep over, and the absence of it is the number one threat to their well being.

I have friends who have divorced when their COBRA coverage was about to run out, just so they could continue it for an additional 18 months. Their child had a shunt and frequent seizures, so no insurance company would touch him in the free market. Preexisting conditions matter.

The solution to the health care situation in America must deal with the issue of preexisting conditions. Parents who lose their health insurance and then have to go onto the open market and buy health insurance are not able to do so if they have a child with special needs. If they are able to purchase health insurance, their child's preexisting condition may be excluded from coverage. And, if they have any assets or income at all, their kids usually won't qualify for Medicaid until they turn age 18.

Further, Medicaid and kids health insurance programs need to be funded. There is never enough money, but many people with disabilities rely solely on these programs for insurance, and when they aren't funded sufficiently, coverage gets cut or providers don't accept Medicaid patients.

Let's hope that our next President will not only be a good leader, but a wise leader.

We need one.

© 2008 The Estate Planning Law Group.

WANT TO USE THIS ARTICLE IN YOUR E-ZINE OR WEB SITE? You can, as long as you include everything in quotes with it: "© 2008 The Estate Planning Law Group. Written and edited by Kirsten Izatt and Bill Deitch. Kirsten and Bill's mission is to ensure that the parents of children with special needs have the information and resources they need to build a fortress of protection around their child that will last a lifetime. Get their revealing, enlightening, and sometimes even humorous "SNAP" e-zine at www.SpecialNeedsAllianceProject.com.".

Need a Break? We've Got Solutions!

Parents ask us lots of questions about services for the special needs community, and one of the most common questions is whether there are respite services available.

If you care for a child with special needs, you know how difficult it can be to find time for yourself and recharge your batteries. Even though finding a qualified caregiver isn't easy, parents need time off from care giving responsibilities to relieve stress and minimize burnout.

Respite programs are meant to fill the gap and provide some much needed time off. Is there ever enough respite care available? No, of course not; the need is overwhelming, but we decided to put together a summary of some of the resources available to parents in the Chicago land area. When funding is available, both the Ray Graham Association and Our Children's Homestead can provide assistance.

If you have additional information regarding respite services in the Chicago area, please let us know. We'll provide that information in future editions of SNAP.

We hope that some of you might be able to benefit from the following resources.

Our Children's Homestead

The respite program at Our Children's Homestead provides 15 hours of respite monthly (180 hours annually) to clients who qualify for the program. The program is funded by the Illinois Department of Human Services. Qualifying disabilities for the program are seizure disorders, cerebral palsy, mental retardation and Down Syndrome.

Potential clients submit an application, including documentation of disability. DHS will determine whether you are eligible for the program. The approval process takes about three weeks.

Each family is responsible for locating their own respite worker. The caregiver must be over the age of 18 and must not reside in the home. Many clients are able to use relatives as respite workers. Our Children's Homestead advises clients to network with other parents to help find a worker. Often college students are interested in this type of work. The client's school or other programs they are involved in are good resources to find respite workers. Once a worker is located, that worker must submit an application to Our Children's Homestead submit to a background check-including fingerprinting. Once the caregiver is cleared, they can start.

The respite caregiver submits billing to Our Children's Homestead once a month, and parents are reimbursed by check. There are approximately 50 families in currently in the program. Interested families can contact Debbie Freke or Marissa Allen at (630) 369-0004.

Ray Graham Association

Ray Graham provides a respite voucher program when limited funds are available. To qualify, you must meet the following criteria: a child/adult with a developmental disability resides in the family home; the individual with a disability does not receive residential respite services; the family resides in Illinois. When limited funds are available, families residing in DuPage County will be given the highest priority.

Respite voucher funds can only be used to purchased and/or provide services/support that provides relief to the primary caretaker within he family. Voucher funds may be used to hire someone to come into your home to take care of the family member with a disability.

You may hire related family members who do not reside in the family home, friends and/or neighbors, or individuals recruited from the community.

The maximum allocation of respite hours per famiy that can be approved is the equivalent of 180 hours at $ 7.00 per hour. Total awards may not exceed $ 1,260.

If you would like to apply, a meeting will be scheduled with the respite administrator in order to discuss specific respite needs of your family. Families must reapply on a yearly basis. If your application is approved, families will receive a Respite Family Voucher Plan, a release of liability form, payment cycle document, and a set of payment vouchers.

2008 © The Estate Planning Law Group

WANT TO USE THIS ARTICLE IN YOUR E-ZINE OR WEB SITE? You can, as long as you include everything in quotes with it: "2008 ?The Estate Planning Law Group. Written and edited by Kirsten Izatt and Bill Deitch. Bill and Kirsten's mission is to ensure that the parents of children with special needs have the information and resources they need to build a fortress of protection around their child that will last a lifetime. Get their revealing, enlightening, and sometimes even humorous "SNAP" e-zine at SpecialNeedsAllianceProject.com."

Four Steps to Securing Your Child’s Future

My child has special needs, and I don’t think he will be able to take care of himself when he is an adult. What can I do to secure his future and make sure that he is protected when my husband and I are gone?

If your child has a disability, you want to secure his or her future. The time to take action is now! The task of preparing your child’s future might seem daunting as you go through the daily whirlwind of therapy appointments, visits to the doctor, and negotiations with your insurance company, but you can do it with a solid team of advisors to make everything as easy as possible for you. Here’s how:

Step 1. If Your Children Are Under Age 18, Legally Document Who You Would Choose to Serve as Both Short Term and Permanent Guardians for Your Child.  Make sure you give documented legal authority and instructions to one or more people who live near your family and would be available immediately to your children. I recommend that you choose people who live within 20 minutes of your home and who would be readily available. Plus, designate in writing exactly who you want to care for your children for the long term and how you want decisions made. If you haven’t already named legal guardians for your kids, go to www.KidsProtectionPlan.com and get it done online right away!

Step 2. Establish a Special Needs Trust to Preserve Eligibility for Public Benefits.  If your child requires or is likely to require government assistance to meet their basic needs, do not leave money directly to your child. Instead, establish a Special Needs Trust designed to manage your child’s resources while maintaining their eligibility for benefits. Planning is important because many people with disabilities will rely on government benefits for support. If your child has more than $ 2,000 in their own name, they will lose eligibility. Medicaid, and other public benefits programs, will not pay for everything your child might need. A Special needs Trust can pay for medical and dental expenses, education, insurance, transportation, social activities, and those special items that make life more enjoyable.

Step 3. Plan in Advance.  Because you don’t know when you might die or become incapacitated, it is important to plan early for your child with special needs. Unlike most other beneficiaries, your child with special needs may never be able to compensate for your failure to plan. Your typically developing child can work and support herself as she reaches adulthood, but your child with special needs will not have this opportunity.

Step 4. Protect Your Child From Financial Predators and Make the Transition of Your Financial Wealth as Easy as Possible for Your Family.  If you plan to transition your financial wealth by a will, rather than by a Revocable Living Trust, information about your child and their inheritance will become part of the public record. When you plan with a Revocable Living Trust, you decide who has access to the information about your child’s inheritance. This protects your child and other family members, who may be serving as Trustees.

Step 5. Provide Adequate Financial Resources to Fund the Special Needs Trust.  Make sure you’ve left behind enough financial resources so that whoever is taking care of your child will have immediate and protected access to your assets and providing for your child will not be a financial struggle. Work with a trusted advisor to determine exactly how much savings or insurance would be sufficient to support your child when you are gone. If you need more, you may wish to purchase life insurance to make up the difference. For more information, go to www.SpecialNeedsFreeGuide.com.

2008 © The Estate Planning Law Group

WANT TO USE THIS ARTICLE IN YOUR E-ZINE OR WEB SITE? You can, as long as you include everything in quotes with it: “2008 ©The Estate Planning Law Group. Written and edited by Kirsten Izatt and Bill Deitch. Bill and Kirsten's mission is to ensure that the parents of children with special needs have the information and resources they need to build a fortress of protection around their child that will last a lifetime. Get their revealing, enlightening, and sometimes even humorous “SNAP” e-zine at SpecialNeedsAllianceProject.com.”

Must Know Resources for Parents at Easter Seals - an Interview with Sharon Pike, Parent Liaison

Written by Kirsten Izatt and Sharon Pike

Sharon Pike is the Parent Liaison for Easter Seals Dupage and the Fox Valley Region.  Learn more about Easter Seals and the services they offer at www.eastersealsdfvr.org, or contact Easter Seals by phone at 630-282-2036.

What is your role at Easter Seals and how did you become involved in the work you do?  As the Parent Liaison for Easter Seals DuPage and the Fox Valley Region, my role is to offer parents resources and referrals that will help make raising their special needs child a bit easier.  I also pull together our parent education series and do a few parent support groups.  I think my biggest (and best) role is that of being a “parent” myself of a child with special needs, so I walk the same walk as they do.    

How did you become involved with Easter Seals?  Good question.   I was not in the social service field prior to my daughter’s birth 18 yrs ago – but now I claim the fame of having my AMD which is my Allison’s Mothers Degree!  I am certified by the State as a Parent Liaison but my best training has been being Allison’s Mom!

How can parents rely on you for assistance?  Parents can rely on me because I know how difficult it is sometimes to navigate the special needs world.  The reason I continue to work at Easter Seals is if I can help one family avoid a road block I feel I am doing my job.   I am a pretty good listener and have many connections in the community -- this helps in being able to direct them to other services.

What are the three most important resources that are available for children?  First and foremost is OTHER PARENTS without question!   Second would be RESPITE!  Third a good DOCTOR!

How are most parents (and their children) referred to Easter Seals?  Most parents find us through their physician, but we also get a lot of self referrals because they have a friend or family member who has used our services.

Who should a parent contact if they are interested in more information or obtaining services?  They should contact our intake coordinator Diana Dixon directly at 630-282-2022.

What is something you would like parents to know about Easter Seals that they probably don’t know?  Oh, there are so many things I would like parents to know about our center.  We have so many things to offer families other than Speech, Occupational and Physical Therapy, such as our Child Development Center that is a fully integrated child care program for kids 6 weeks to 6 years old.   We have a nutritionist on staff who coordinates our Feeding Clinic which is just one of our specialty clinics we offer.

UPCOMING EVENTS AT EASTER SEALS:

We have a Parent Education Workshop Series coming up in September presented by Annmarie Robinson  and Courtney Stillman of Monahan and Cohen.  Our presenters are well known in the field of special education law and they have years of experience!  To register for one or all of the workshops please email Sharon Pike at spike@eastersealsdfvr.org or call her directly at 630-282-2036.

IEP’S
Friday, September 19, 2008   from 10:00 am – 1:00 pm

• Determining goals and objectives
• What are you measuring
• Writing measurable goals and objectives
• Collecting data
• Progress Monitoring

Understanding the Rules
Friday, October 24, 2008    from 10:00 am – 1:00 pm

• Independent Evaluations
• Timelines
• LRE (least resistive environment)
• Mediation
• Due Process
• Private Eval’s

Transition & Problem Solving
Friday, November 14, 2008    from 10:00 am – 1:00 pm

• Know the rule
• Gathering information
• Preparing a plan
• To graduate or not to graduate – that is the question
• The unwritten rules
• What to do when………
• Effective monitoring
  

We hope to see you there!

 

2008 © The Estate Planning Law Group

WANT TO USE THIS ARTICLE IN YOUR E-ZINE OR WEB SITE? You can, as long as you include everything in quotes with it: “2008 ©The Estate Planning Law Group. Written and edited by Kirsten Izatt and Bill Deitch. Bill and Kirsten's mission is to ensure that the parents of children with special needs have the information and resources they need to build a fortress of protection around their child that will last a lifetime. Get their revealing, enlightening, and sometimes even humorous “SNAP” e-zine at www.SpecialNeedsAllianceProject.com.”

A Little Secret About Turning Age 18

Written by Kirsten Izatt

When I first meet with parents who are planning for a child with a disability, I always ask what motivated them to come in and meet with me.

I’ve discovered that parents are often motivated to plan and set up a Special Needs Trust for their child immediately prior to their child’s 18th birthday.

Why? Because they think that it is necessary to set up a Special Needs Trust for their child to be eligible for government assistance at age 18.

I have to admit, I am pleased that the parents are motivated, but let me tell you a little secret . . . they are mistaken about the need to set up a Special Needs Trust right at age 18!

Let me explain.

If an individual with disabilities meets the eligibility criteria for Medicaid and Supplemental Security Income (SSI), they will qualify for benefits at age 18 regardless of whether a Special Needs Trust has been set up for their benefit.

Why all the confusion? It is easy to get confused because if you do internet research (and who doesn’t?), you’ll find lots of information saying the same thing over and over again. Here are some examples I found recently:

“Special Needs Trusts ensure eligibility for governmental benefits.”

“Parents should protect their child’s financial future by setting up a special needs trust.”

“88% of parents have not set up a special needs trust to protect their child’s eligibility for government benefits.”

And so forth. It is very easy for parents to read these statements and mistakenly infer that their child needs a Special Needs Trust to qualify for benefits at age 18.

Here’s the truth about turning age 18 in Illinois . . .

If your child is a U.S. citizen, an Illinois resident, has countable assets of no more than $2,000, and meets minimal income requirements depending your child’s living situation, he or she will qualify for Medicaid (and SSI) . . . if they are disabled; and

2) Your child can qualify at age 18 regardless of whether they have a Special Needs Trust.

Does this mean that you don’t need to set up a Special Needs Trust before your child turns 18?

Not at all.

Here’s the bottom line: if you want to have a say about how your child is going to be cared for when you are gone, you should take the critical steps necessary to protect your child right away—regardless of their age!

Those steps include the following:

1) Secure eligibility for critical government benefits,
2) Set up a Special Needs Trust that “fits” your child,
3) Select a care team, Trustee, and advocates,
3) Create a Memorandum of Intent,
4) Provide adequate financial resources to fund the Special Needs Trust,
5) Name short term and long term guardians for ALL your children under age 18,
6) Make sure that if you die, your money actually gets into the Special Needs Trust and doesn’t end up in your child’s name by accident; and
7) Update periodically as your family changes, your assets change, and the law changes.

I hope these guidelines can provide you with some comfort as you make decisions about the future care of your child.

There is a framework available to parents of children with special needs, and it does work.

We outline more of the steps parents can take at www.SpecialNeedsFreeGuide.com.

2008 © The Estate Planning Law Group

WANT TO USE THIS ARTICLE IN YOUR E-ZINE OR WEB SITE? You can, as long as you include everything in quotes with it: “2008 ©The Estate Planning Law Group. Written and edited by Kirsten Izatt and Bill Deitch. Bill and Kirsten's mission is to ensure that the parents of children with special needs have the information and resources they need to build a fortress of protection around their child that will last a lifetime. Get their revealing, enlightening, and sometimes even humorous “SNAP” e-zine at www.SpecialNeedsAllianceProject.com.”

Why We Need Your Help

Written by Bill Deitch and Kirsten Izatt

The most gratifying aspect of our work is advising families who are planning to protect their children with special needs. We have learned first hand about the resources available to the community from parents, grandparents, advocates, lawyers, the leaders of non profit organizations, social workers, and therapists who are all dedicated to improving the lives of people with disabilities. Sometimes they ask questions; sometimes they have the answers.

We knew there had to be a way to connect these dedicated and knowledgeable people to the wider community and we knew that the information had to be easily accessible to parents with busy schedules and tremendous responsibilities.

Out of that need, the idea for SNAP was born. 

We decided to create a forum that would allow these people to share their experiences and their wisdom with others. But, we couldn’t move forward until we had the communications infrastructure in place to deliver our online magazine and easily manage our subscribers. After a lot of work, we finally did it. This is our first issue.

But we need your help! 

It isn’t always easy to ask for help, but we are going to do it anyway. We know that many of you have friends and family who have loved ones with special needs. If you do, please forward this e-zine to them and ask them to subscribe so they can become part of our winder community.

We plan provide you with insider tips about special needs planning. But we aren’t going to stop there; we are also going to invite guest authors to share their wisdom, experience, and knowledge with the wider disability community.

Do you have something to share?

If you do, we would love to hear from you. Are you the leader of a non profit organization dedicated to the special needs community? A parent advocate who can provide inspiration and share practical experiences? A therapist or social worker who can discus resources, strategies, and experiences that will benefit our subscribers? Public benefit specialist? Lawyer or other advocate in the field of special education? Book author? Financial advisor who works closely with the special needs community? Physician?

We plan to write, but we would also like to invite you to write if you have information to share with the special needs community. To find out how you can share your wisdom and resources with our online community, go here.

You might be wondering, why do we do what we do? 

The reason is simple. Almost every time we speak to a parents’ group, someone comes up afterwards and tells us that this was the first time they had ever heard many of the issues we were discussing. Or, that they are in the middle of their estate planning, but their lawyer never even considered the fact their child has autism (for example) and how that might affect their planning.

We want to make sure that the special needs community has the information and resources needed to make the very best decisions.

That’s our promise to you. We want you to hold us accountable.

2008 © The Estate Planning Law Group

WANT TO USE THIS ARTICLE IN YOUR E-ZINE OR WEB SITE? You can, as long as you include everything in quotes with it: “2008 ©The Estate Planning Law Group. Written and edited by Kirsten Izatt and Bill Deitch. Bill and Kirsten's mission is to ensure that the parents of children with special needs have the information and resources they need to build a fortress of protection around their child that will last a lifetime. Get their revealing, enlightening, and sometimes even humorous “SNAP” e-zine at www.SpecialNeedsAllianceProject.com.”