The Special Needs Planning Center

New Special Needs Planning Center Website

2010-02-14T16:37:00.000-06:00

The new Special Needs Planning Center website is up and running at http://www.thesnpcenter.com/. In the coming weeks we'll get our national workshop calendar updated and continue to add resources over time.

About the Kansas Autism Waiver, from Kansas Social and Rehabilitation Services (SRS)

2010-01-05T12:49:00.000-06:00

The information from documents found on the Social and Rehabilitation Services (SRS) website:
SRS Summary of Services

For more information about SRS:
http://www.srskansas.org

Children Served by the Autism Waiver
Selection Process for Autism Services
Types of Services Provided
Training Opportunities for Service Providers
Children Served by the Autism Waiver

The target population for this waiver includes children with:

Autism,
Asperger’s Syndrome, and
Pervasive Developmental Disorder – Not Otherwise Specified.

Children are able to enter the waiver program from the age of diagnosis until their sixth birthday. The autism waiver services are limited to three years, however, an additional year may be submitted for approval.

The institutional alternative for the Waiver program is a State Mental Health Hospital.

Eligibility for Services

To be eligible for the Autism Waiver services a child must:

Receive an Autism Spectrum Diagnosis by a licensed Medical Doctor or Ph.D. Psychologist using one of the following approved autism specific screening tools.

CARS – Childhood Autism Rating Scale
GARS – Gilliam Autism Rating Scale
ADOS – Autism Diagnostic Observation Scale
ADI – Autism Diagnostic Interview-Revised
ASDS – Asperger Syndrome Diagnostic Scale
Other Autism specific tools are also approved on an individual basis by the SRS Review Team

Please visit the Online Library for more information about these screening tools

When their position on the Autism Waiver waiting list comes up, the child will be assessed for a Level of Care Determination to establish functional eligibility for Waiver services. The Vineland II Survey Interview Adaptive Behavior Scales will be the tool used to assess functional eligibility.

A total score or a score on any two elements of the Adaptive areas (Communication, Daily Living Skills, Socialization, and Motor skills) of two standard deviations below the mean (score of 70) makes a child eligible for the Waiver.

OR
A total score or a score on any two elements of the Adaptive areas (Communication, Daily Living Skills, Socialization, and Motor skills) of one standard deviation below the mean (score of 85) prompts the assessor to review the scores on the Maladaptive Behaviors (internal, external, or total). If the Maladaptive Score on the internal, external or total is clinically significant the child is eligible for the Waiver.
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Adams Burch, LLC - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

Special Needs Planning Workshop in Las Vegas: Transition Focus

2009-11-04T13:44:00.001-06:00

Our next special needs planning workshop is set for Las Vegas on Tuesday, December 1st at 6:00pm. The workshop will be held in the law offices of:

Fette + Helquist/Tax Lawyers, LLC
8880 Sunset Road, Suite 250
Las Vegas, NV 89148

For more information or to register for the workshop please contact the special needs planning center at (816) 741-1100 or email hburch@specialneedskc.com.

Workshop summary below:

There are a number of issues to address between the ages of 16 and 25 for families who have a child with special needs. We will cover the transition from school to adulthood and outline why Social Security and Medicaid are critical components to enhancing the quality of life for our children. We will also review the regulations involved with retaining Social Security. We will discuss the advantages and disadvantages of graduating at age 18 and the transition from the school system to adulthood. The eventual transition from living at>home into an independent living or a residential setting will be worked through and work programs discussed. You will walk out with a better understanding of the resources available prior to age 18 and more importantly beyond age 18. Guardianship will be defined and we’ll consider what alternatives may be available. The workshop will cover why you need to develop a continuity of care plan for when you are no longer able to take care of your child or children. We’ll also illustrate how Special Needs Trusts help to ensure the quality of life for your child when you are no longer able to provide support.
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Adams Burch, LLC - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

How a 'Sole Benefit Trust' Can Either Hurt or Help a Person With Special Needs (courtesy of the Academy of Special Needs Planners

2009-10-29T14:11:00.001-05:00

Click on the title to link to a recently published article by the Academy of Special Needs Planners that we found interesting. The article summarizes creating a sole benefit trust as a way to transfer assets to qualify for medicaid. Their are potential signficant issues for the beneficiary of the sole benefit trust that must be considered.
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Adams Burch, LLC - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

A Special Need Planning Timeline: 9 Steps to a Sound Family Plan

2009-10-15T14:09:00.002-05:00

Planning for the future well-being of your children is a daunting task for any parent. Add the complexity of adequately providing for the future care of a son or daughter with special needs and the process becomes exponentially more challenging.

Any special needs plan requires thoughtful dedication by the parents and often involves the utilization of multiple resources and professionals. The question for most parents is where to even start? The answer of course varies based on the child’s diagnosis, age, family situation and numerous other factors. There is however a core guide that I believe can be provided to any parent of a child with special needs to help work through the process (a process I might stress is accomplished over time).

The keys to a sound special needs plan are complicated and vary according to each situation. The list below is not meant to be a comprehensive checklist, but instead a series of nine core issues that I believe every parent must address. The actual creation of a special needs plan will take time, focus and creativity. Don’t be afraid to ask for help. Include your child’s educators, family, friends and professionals that can offer support and guidance through the process.

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Step 1 – Understand the Process is Different

The initial step should be a full understanding that traditional planning advice will not work for your family. You should not engage the corner financial advisor, a general estate planning attorney or simply enlist the help of your friend’s advisors. There are professionals in the area of special needs planning and your child deserves you take every necessary step to make sure it is done right. An effectively designed special needs plan is created on the foundation of a clear understanding that the process is a complex, yet critical process. Without the appropriate plan in place a family leaves too much of their child’s future care to chance.

Step 2 – Decide on Future Guardians

If you are no longer able to care for your children who will? That should be a question that every parent fully analyzes and answers. It does now however stop with simply deciding who you would trust to raise our children if you are no longer able. Once you make the election you should do your part by fully educating the future guardians as to what they are signing on for. Make it an open and honest conversation that provides the future guardians an opportunity to really think through the responsibility. Assuming that they will accept the honor you then need to make sure that your legal work reflects the decision.

Step 3 – Understand Social Security and Other Available Supports

By recommending that you understand social security, Medicaid and other vital supports that your child may rely on I am not suggesting that you can or should become an expert. The code relating to the support of an individual with special needs could consume you for years without you fully grasping the programs. You can however develop an understanding of what the core benefits are, how your child may qualify for them and just as importantly how they can maintain these benefits. We are generally speaking about post age-18 supports, but these benefits can take various forms and even begin prior to age 18 in some instances.

Step 4 – Establish a Special Needs Trusts

If you are taking the time to read this you have likely already read somewhere else that a special needs trust is a core piece of any special needs plan. These trusts are complicated and should not be drafted by an attorney that does not dedicate a significant portion of their practice to this type of planning. SNT’s have various uses and come in many forms, but allow me to summarize them the best I can relating to their most common usage. Federal guidelines state that for an individual to qualify for social security and various other programs after the age of 18 they cannot have more than $2,000 in assets. For parents to be able to provide ongoing support and care for their child after they are no longer here the SNT is the preferable way under current law to be able to leave assets behind to their child without jeopardizing these vital benefits.

Step 5 – Adjust Your Existing Financial Plan

Every family, regardless of means, can benefit from a sound financial plan. However, for families with the responsibility of caring for a loved one with special needs your existing plan simply will not work. That is to say that your plan needs to be different than your neighbors, your relatives and likely quite different than what your existing advisor proposes. Your plan is more complex, consists of more “non-financial” issues than financial and likely means more to the future health and well-being of your child than most.

Step 6 – Manage the Age 18 Transition

I could write a book on the transition to adulthood for your child, but there are some key decisions to make as your child becomes an adult. It starts with your access to information and your ability to “help” your children make decisions ending. Two key issues come to mind for most families: financial decisions and medical decisions. This leads to the determination as to whether guardianship or some alternative is appropriate for your family. Also, age 18 is typically the age that your child is eligible for social security and other benefits based on their financial means instead of Mom & Dad’s. Couple that with the end of high school approaching and you can just imagine the commotion.

Step 7 – Take a Look into the Future

Sound impossible? There is no magic age where a decision has to be made, but eventually parents may have to make some residential decisions with their child. There is not a right age to make a change and there is certainly no single answer, but it is the parent’s responsibility to help determine what the next step is. That could mean a change while Mom & Dad are still here to manage the process or it might be making a decision for when Mom & Dad no longer are. The conversations won’t be fun and thinking about it won’t be easy, but it is our task to plan for the inevitable.

Step 8 – Develop a Continuity of Care Plan

Someday the various roles you play for your child may need to be carried on by someone else. Is it reasonable to expect another person or organization to step into that role without you adequately arming them with the necessary information? Who are your child’s physicians and which ones do you not want your child to see again? What medications or therapies should be continued and which ones should not? Are there certain schedules or rituals that should be continued? How about a listing of family, friends and relationships that should be maintained? The list seems endless, but there are tools available to help you organize this information that every family should utilize.

Step 9 – Educate Family and Loved Ones

After you’ve spent countless hours creating a care plan for your child it is time to educate your support network. This network can consist of other children, family, close friends, church & other organizations. In order for the plan to be carried out as designed it takes a cohesive network to ensure that the care you want for your child is ultimately provided.

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This article was drafted by Heath Burch, CFP, a partner with The Special Needs Planning Center. With offices in Kansas City, Las Vegas and New York the SNPC is currently building a nationwide advisor network solely focused on serving the special needs community. For more information on The Special Needs Planning Center go to www.specialneedskc.com. You can also email Heath directly at hburch@specialneedskc.com .

Special Needs Planning Center - New York

2009-09-10T14:07:00.001-05:00

We are excited to be able to announce that we are adding an advisor in New York City and should be up and running by October 1st! We'll soon have the detailed contact information, location and a special needs planning website dedicated to New York and will post the information as soon as we can.

In the meantime families can continue to contact us through our Kansas City office. Stay tuned!

Blog to Visit: Special Needs Truths '08

2009-08-21T11:52:00.002-05:00

Came across another interesting blog that highlights and tracks candidates positions and records on disability issues. The summary provided by the blog:

Advocating for children and adults with disabilities, this blog began during the 2008 presidential campaign to track the candidates' positions and records. The election is over, but the need for citizen action remains. We all need to work together to make changes that benefit all Americans. Don't let your elected officials play politics with your children. They deserve better. And you deserve the facts.

The site is: http://specialneeds08.blogspot.com/.

Special Needs Planning Center in the News

2009-08-20T08:10:00.001-05:00

Click on title to access a recent article on the Special Needs Planning Center

More Exciting News

2009-07-15T08:43:00.003-05:00

As of this week the Special Needs Planning Center now has an attorney in office to aid families in completing the much needed legal work that is a part of any special needs plan. Through a partnership with The Jones Law Firm, P.A. and Leslie C. Byram, P.A., Leslie will be officing in the Special Needs Planning Center and be available to help families in the creation of their estate plans, drafting special needs trusts and guardianship proceedings.

We are very excited about this change and hope that it will make the planning process for families more accessible and the entire process more efficient. You can now contact the Special Needs Planning Center for your family and financial planning needs, as well as your legal needs at (816) 741-1100.

New Nevada Information via our Twitter Feed

2009-07-10T08:47:00.001-05:00

We added some worthwhile links to our Twitter feed today regarding special needs planning and resources in Nevada. Go to www.twitter.com/SpecialPlanning for more.

Exciting News: The Special Needs Planning Center Services Soon to Be Available on the West Coast

2009-07-09T11:44:00.004-05:00

Although all of the details are not finalized, I can announce that The Special Needs Planning Center is in the final stages of expanding our services to the west coast. Beginning in September we will be available for educational workshops and family meetings in Las Vegas.

Initially, the plans will allow for us to be on the ground and available to families the equivalent of one week per month. The balance of our time will still be spent here in Kansas City and like all of our existing clients that live throughout the country we will continue to provide a lot of our services via phone and email.

To say the least we are very excited about this opportunity to begin serving families more directly in that part of the country, as this will allow us to serve families from Los Angeles to Phoenix to Las Vegas and more!

As we continue to try to bring special needs planning information to parents throughout the country please let us know how we might be able to help. This is a big addition to our practice and is a big sacrifice for Scott and I to make, but we feel that it is important to begin providing this vital service to families more consistently outside of the Midwest.

Commingling Trust Assets with Trustee Accounts

2009-06-23T09:36:00.006-05:00

There is a good article available through The Academy of Special Needs Planners regarding the commingling of trust assets with personal accounts. Although the example used in the article might be extreme, it illustrates some of the issues that can arise.

http://www.specialneedsanswers.com/resources/article.asp?id=6196&section=4

In this example the culprits are unfortunately the disabled individuals parents, but it could have just as easily been anyone fulfilling the trustee role. Parents not only need to think through who the contingent trustee will be, but also how a checks and balances system will be maintained to protect the trust beneficiary.

There is not a question that the recordkeeping responsibilities that go along with the role of trustee can be cumbersome, but it is clear that the task is vital to both the sustainability of the trust and the underlying care provided by the trust.

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Adams Burch, LLC 2007 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.
Adams Burch LLC and The Special Needs Planning Center intend to distribute resources and information to parents and do not endorse this or other particular products.

Proposed Autism Treatment Acceleration Act of 2009

2009-06-15T11:30:00.003-05:00

Click on the post title or the link below for more details...

http://www.autismvotes.org/site/c.frKNI3PCImE/b.4784269/k.C0E5/ATAA.htm

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Adams Burch, LLC 2009 - This site should not substitute personal professional, legal or medical advice in any way.

The accuracy and personal applicability of this information is not guaranteed.Adams Burch LLC and The Special Needs Planning Center intend to distribute resources and information to parents and do not endorse this or other particular products.

New Autism Spectrum Disorder Parent Support Group

2009-06-11T12:18:00.002-05:00

Announcing a New Parent Support Group

Parents of children, adolescents and adults with autism spectrum disorders are cordially invited to a new support group. The focus of each group will be decided by the parents present at the meeting. This group hopes to discuss and provide advice from both a professional perspective and parent-to-parent perspective on topics pertinent to your lives.

When: Third Saturday of each month from 10:30AM-12PM. Note: This group will meet on June 20th from 9-11AM.

Where: Responsive Centers for Psychology and Learning, 7501 College Boulevard, Suite 250, Overland Park, Kansas 66210

At this time, childcare will not be provided.

Moderator: Jeanne Holverstott, MS is the autism spectrum specialist with Responsive Centers for Psychology and Learning, where she has practiced for three years. She graduated from the University of Kansas with a Master’s Degree in the autism and Asperger Syndrome program. She has worked with children on the spectrum for eight years in a variety of settings and capacities, including a paraeducator, a home therapist, a teacher, a home provider, and a community-based specialist. She is currently working on certification for Relationship Development Intervention™. Jeanne teaches classes on the autism spectrum at Johnson County Community College, has authored texts with Brenda Smith Myles, and currently writes a column for the spectrumconnection.net.

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Adams Burch, LLC 2009 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

Adams Burch LLC and The Special Needs Planning Center intend to distribute resources and information to parents and do not endorse this or other particular products.

Our First Down Syndrome Specific Special Needs Planning Workshop

2009-06-04T14:01:00.001-05:00

We are holding our first ever down syndrome specific special needs planning workshop for parents on Tuesday, July 16th in Overland Park, KS. You can get more information at our website at www.specialneedskc.com .

New Workshop and Special Needs Community Event Calendar

2009-06-04T11:39:00.004-05:00

We have updated the community calendar and workshop schedule on our website. You'll find a current listing of all special needs planning workshops, as well as any special needs community events or fundraisers that might be appropriate.

It will surely take some time to build this into the central special needs community calendar, but we will continiously update the calendar and build it up over time. Please feel free to send any events that you would like added and when appropriate we'll get it updated right away.

http://specialneedskc.com/calendar/demoTOC.php

Legal Summary of Special Needs Planning: Providing for Those With Special Needs

2009-05-26T11:20:00.006-05:00

I was sent a well written legal summary of special needs planning, including the use of special needs trusts from a law firm located here in the midwest. It makes a concise case for why special needs trusts are typically the best way to provide for your dependent with special needs. You can find the summary at:

http://www.armstrongteasdale.com/ClientAlerts/CA_ProvidingForThoseWithSpecialNeeds-May09.htm .

To find more specific information and research the topic of special needs trusts further reference the previous entries in the Post Archive on the left hand side of this page.
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Adams Burch, LLC 2009 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.Adams Burch LLC and The Special Needs Planning Center intend to distribute resources and information to parents and do not endorse this or other particular products.

A Midwest Based Summer Camp

2009-05-21T16:13:00.006-05:00

Announcement courtesy of Community Living Opportunities, http://www.clokansas.org/
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A CAMP LIKE NO OTHER! Fun and learning for children with autism between ages 6 and 18 and opportunities for parent training...

http://www.clokansas.org/pages/MFARM.html

We are pleased to announce that Midnight Farm has opened enrollment for two summer day camps. This is a great opportunity for kids with autism and their parents to learn new skills, have fun, enjoy nature, interact with farm animals, and participate in guided activities with professional trainers.

CAMP ACTIVITIES:Animal Petting and CareCamp CraftsSnack CraftsSing-AlongsSocial ActivitiesNature HikesPainted Horse ParadePainted Horse BathKites and ParachutesSupported Horseback Riding (additional fee)

WHAT A PLACE! Midnight Farm is situated on 40 acres and features a 20,000 square foot, multipurpose facility, including a rustic meeting lodge, a bunk house, an equestrian facility/arena, and a barn. Outside the barn are paddocks, petting areas for animals, walking and horseback riding trails, a fishing pond, and picnic areas.Camp staff are trained in the tenets of applied behavior analysis for the purpose of teaching during camp activities. Teaching targets include social skills, play, animal care, crafts, and games.

CAMP JULY 7th - JULY 10th -- DAY CAMP FOR KIDS WITH AUTISM AND TRAINING FOR PARENTS
Tuesday - Friday (9:00am to 4:00pm) Kids go to camp while parents learn empirically-based techniques for reducing problem behavior and teaching skills such as communication, social skills, self-care, play, and hobbies. Parents practice skills with their children and receive feedback from trainers during parts of the camp day. Cost: $380 per childParent training is free of charge if parents have a child attending camp.The cost is $80 for a parent of a child with autism who wishes to attend training but does not have a child at camp.

CAMP TRAINERS INCLUDE: Jim Sherman, Ph.D., Director of the Kansas Early Autism ProgramNan Perrin, MA, BCBA, Director of CLO's Early Childhood Autism ProgramAmy McCart, Ph.D, University of Kansas, Beach Center on DisabilityNikki Wolf, Ph.D., University of Kansas, Beach Center on DisabilityDiane Bannerman Juracek, Ph.D., BCBA, Director of CLO's Children Network

For More information and enrollmentcontact the camp director:Diane Bannerman Juracek, Ph.D., BCBA, at 785-218-9358 Email: campdirector@clokansas.org

If you are interested in volunteering at Midnight Farm contact Yolanda Hargett at 913-341-9316 ext.102Email: volunteer@clokansas.org

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Adams Burch, LLC 2009 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

Adams Burch LLC and The Special Needs Planning Center intend to distribute resources and information to parents and do not endorse this or other particular products.

Autism Resource - Let's Cook

2009-05-20T08:17:00.002-05:00

Let's Cook! uses multimedia (videos, slides, images and text) to demonstrate how parents and teachers can help kids with autism build functional skills through enjoyable, everyday activities such as cooking. For more information go to http://www.mywire.com/pubs/Lets-Cook/ .

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Adams Burch, LLC 2009 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

Adams Burch LLC and The Special Needs Planning Center intend to distribute resources and information to parents and do not endorse this or other particular products.

Book Notice: The Elephant In The Playroom

2009-05-18T15:56:00.002-05:00

Click on the title for a CBS News video highlighting the book

Resources If You Lose Your Job

2009-05-18T15:35:00.004-05:00

Over the last 6 months we have been faced with the task of helping a number of families navigate through an unwanted career change or forced early retirement. Some families walk into our offices well prepared for the transition, while others unfortunately have not.

We have compiled a list of online resources that may be of help to families that are now dealing with the new stress. If you have a friend or loved one that is going through this transition the list below is an easy way that you can help.

If you have already lost your job and need help understanding what comes next please let us know. Or, if you simply would feel better making sure you have done all that you can in the event you are next we are happy to help.
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LOSING YOUR JOB CHECKLIST

Losing Your Job: Ten Things You Can Do to Make It Less Painful
http://www.nolopress.org/article.cfm/ObjectID/589BCD83-DA29-4915-BA09B428C90BE5F0/catID/3D3D9B4B-C63B-4E74-BA5458D500BBF72A/104/150/146/ART/

Losing Your Job Without Losing Your Shirt
http://financialplan.about.com/cs/personalfinance/a/LosingYourJob.htm

LOSING YOUR JOB NEAR RETIREMENT

Losing Your Job After 50
http://bulletin.aarp.org/yourmoney/work/articles/losing_your_job_after50.html

HEALTH CARE ISSUES WHEN LOSING YOUR JOB

Does Losing Your Job Mean Losing Your Healthcare
http://www.npr.org/templates/story/story.php?storyId=97204664

Understanding Cobra
http://www.insurancetree.com/health-insurance/cobra/

TAX CONSEQUENCES

Tax Consequences of Losing Your Job
http://ezinearticles.com/?Tax-Consequences-of-Losing-Your-Job&id=2144930
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Adams Burch, LLC 2009 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

What is an IEP?

2009-05-14T09:29:00.005-05:00

The information below is a brief summary answer for parents looking to find out what an IEP is. Many of you are already fully aware of the role an IEP plays in your childs development within the school district, but for those of you whose child has yet to reach school age it is never to early to begin your research.
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Question: What is an IEP?

Answer: IEP stands for Individualized Education Program (alternatively called an "Individualized Education Plan," "Individual Education Plan," or some combination thereof). This is a legally binding document that spells out exactly what special education services your child will receive and why. It will include your child's classification, placement, services such as a one-on-one aide and therapies, academic and behavioral goals, a behavior plan if needed, percentage of time in regular education, and progress reports from teachers and therapists. The IEP is planned at an IEP meeting.

The individualized part of IEP means that the plan has to be tailored specifically to your child's special needs -- not to the needs of the teacher, or the school, or the district. Goals, modifications, accommodations, personnel, placement, all should be selected, enforced and maintained with the particular needs of your child in mind. "We don't do that," for example, is not an individualized response. If your school has never had a child like yours (and since your child is an individual, they haven't), and now they do, and a service is appropriate to his or her needs, then they do do that now.

Source: http://specialchildren.about.com/od/specialeducation/f/iepfaq01.htm
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Adams Burch, LLC 2009 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

Legislative Changes That Could Affect Kansans with Developmental Disabilities

2009-05-12T12:27:00.004-05:00

The Kansas House of Representatives is set to consider a budget bill which will cut more than $20 million from services for Kansans with developmental disabilities. This represents a near 10% cut in funding for DD services in the state of Kansas.

What does this mean?
1. A complete loss of all discretionary State dollars that are used to support more than 2,000 Kansas children and adults with DD. Roughly 22% of all Kansans with DD rely on these dollars to live in communities across the state.
2. An almost 50% cut in Family Support Grants which are used to provide vitally-needed help to families who care for a loved one with DD.
3. A cut of more than $8 million in the HCBS DD Waiver, which was already critically underfunded, which will result in an even larger waiting list for help (current waiting lists already number more than 3,900 children & adults with DD).

How does this affect you?
These cuts will result in job eliminations in communities around the state, and potential wage cuts to direct-care staff who we know already make wages at, or near, the poverty line. One Kansas DD service provider has already calculated that 15% wage cut will need to be enacted in order keep the organization's doors open.

In Sedgwick County over 300 individuals are served in residential, day programs or supportive home care through State Grant Funds. A reduction could eliminate some of these individuals from services and the remainder would have their services drastically reduced.

The State Aid reduction of $1.2 million will impact the dollars utilized for crisis support and programs for youth that are provided by The Arc and Rainbows United.

What can you do to help?
Call your legislator right now. You don't need to be an expert on anything but your own experience at your job & your reaction to this news. Imagine how a cut like this would affect your life; your family's lives; the persons you serve & their families. Tell your legislator that IF they pass this bill it will affect the lives of individuals in their own community

Information courtesy of the ARC of Sedgwick County KS - http://www.arc-sedgwickcounty.org/

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Adams Burch, LLC 2009 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

Cruises Available for Individuals with Autism and Their Families

2009-05-11T10:44:00.002-05:00

Over the weekend we were made aware of "Autism on the Seas". They are dedicated to servicing the cruising travel needs of families and individuals faced with Autism and Asperger Syndrome, and all Cognitive, Intellectual and Developmental Disabilities as well as (but not limited to) Cerebral Palsy and Down Syndrome.

They have been in collaboration with Royal Caribbean International since 2007. They also provide "Individual Autism Cruise Services" for those individuals and families who wish to cruise on any date or ship of their choice on Royal Caribbean, Celebrity, NCL, Carnival, or Disney.

More information can be found at http://www.alumnicruises.org/Autism/Autism_Home.htm .

SNPC Now on Twitter

2009-05-08T11:16:00.003-05:00

The Special Needs Planning Center is now on Twitter. Each day we'll be adding relevant news related to special needs planning, key issues affecting our families and passing along links to helpful information. You can follow us at:

http://twitter.com/SpecialPlanning

Additional Resources

2009-05-08T10:03:00.004-05:00

As you know this blog was not designed for daily updates and information, but instead it is used as a library of articles on specific topics of interest regarding special needs planning. Although we will certainly continue to add articles from time to time, we have also developed an article database in our website that you can use to find timely information on a number of special needs planning related topics.

Currently, articles of interest include:

Choosing a Guardian, source-Special Needs Answers

Choosing a Trustee for a Special Needs Trust, source-Special Needs Answers

Considering a Case Manager, source-Special Needs Answers

Divorce & Special Needs Planning, source-Special Needs Answers

Divorce, Child Support & Special Needs, source-Special Needs Answers

Effect of Military Survivor Benefits, source-Special Needs Answers

Funding a Special Needs Trust with Life Insurance, source-Special Needs Answers

Funding a Special Needs Trust, How Much is Enough, source-Special Needs Answers

Guardianship Basics, source-Special Needs Answers

PASS Program, source-Special Needs Answers

Problems with UTMA Accounts, source-Special Needs Answers

Protecting a Settlement, source-Special Needs Answers

SNTs and the Five Year IRA Distribution Rule, source-Special Needs Answers

Special Needs Tax Benefit Checklist, source-Special Needs Answers

SSI vs SSDI, source-Special Needs Answers

Stimulus Package & Special Needs, source-Special Needs Answers

Ticket to Work Program, source-Special Needs Answers

Trustee Responsibilities, source-Special Needs Answers

What a SNT Can't Pay For, source-Special Needs Answers

To review the articles free of charge simply go to http://www.specialneedskc.com/ and click on Educational Articles link on the left hand side of the page.

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Adams Burch, LLC 2009 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

Why Should You Be Concerned With Planning for Your Child with Special Needs?

2008-09-03T11:31:00.004-05:00

It should be assumed that every parent would be interested in the long-term outcomes of their children. When that parent considers the reality of their child with special needs requiring life-long assistance and planning, the task becomes particularly daunting as the child will, in many cases, outlive the parents. The sometimes daily tasks of orchestrating ancillary supports and services, social opportunities and training, and the vastly wide array of personal preferences requires careful consideration and planning.

Moreover, at age 18, most children are emancipated and declared able to act as their own agent in matters related to insurance, etc. A few health plans will continue to cover adult children if they are full-time students or who have a disability onset before age 18. Due to astronomical individual insurance premiums, typically families obtain Medicaid which will stay with their child for life and is of no cost to the child. To be eligible for Medicaid, the child typically must qualify for Social Security (SSI), having no more than $2000 in assets (federal guideline that may be less in some states) and often making no more than roughly $900 per month. Further, they must be deemed unable to be gainfully employed, with periodic review. These are just a couple of highlights for illustration of the breadth of the financial issues.

Although basic needs are often being met through state Medicaid programs, the logistics of carrying out a client-centered plan and ensuring the necessary funds to participate in what most of us consider quality of life issues such as relaxation and leisure require much more intensive planning. This is accomplished through the development of Special Needs Trusts, comprehensive continuity of care plans and a team of professionals and friends committed to assisting your family throughout your child’s lifetime. For more information on Special Needs Trusts and related planning issues, please visit http://www.specialneedskc.com/ .

This post submitted by Scott Adams, CFP - Partner
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Adams Burch, LLC 2007 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

An Educational DVD for Parents

2008-06-03T13:27:00.002-05:00

Over the course of a given year our offices provides between 40 and 60 educational workshops for parents throughout the midwest. Unfortunately, that isn't enough to even begin distributing the information that parents need when planning for their child with special needs in the midwest, let alone to families throughout the country.

A non-profit organization is now doing their part to help distribute this information to parents. The Gifted Learning Project has developed an educational DVD, Financial Planning for Special Needs, and has made it available to the public. The DVD was created to help parents gain a basic understanding in how planning for their child with special needs is different. The video was created by a parent and the DVD description is found below:

No matter what the age or disability, parents of children with special needs have many serious questions about how best to provide for their child's future well-being. We realize that you face unusually difficult planning decisions regarding the welfare of your child. The most important of these is probably how to prepare for your child to apply for SSI or SSDI, maintain benefits, wade through the difficult decision of guardianship or durable powers and to provide for ongoing care financially and physically after your death.

Girard Sagmiller attended a workshop conducted by the Special Needs Planning Center and felt every parent desperately needed this information. He worked with, The Gifted Learning Project (theglp.org) and Scott Adams to develop this timely DVD. This DVD workshop was developed by the The Special Needs Planning Center in Liberty, MO. The center presents over 60 special needs planning workshops annually throughout the Midwest.

The program will provide advocacy-based solutions in the areas of financial planning, access to and maintaining government benefits, self-determination vs. guardianship and creating a blue print for your child's lifetime in order to enhance and improve the quality of life for those with special needs.

Scott Adams and is a financial planner (CFP) and one of the Founders of the Special Needs Planning Center. He is also a parent of four small children, three of whom have special needs. Scott speaks throughout the Midwest in hopes of helping parents better understand the technical and confusing process of protecting their children.

To find out more about The Gifted Learning project or if you are interested in ordering your own copy of the video you may go to their website at http://www.giftedlearningproject.org . You can also order your copy through Amazon.com at http://www.amazon.com/FINANCIAL-PLANNING-FOR-SPECIAL-NEEDS/dp/B000R4FUJU/ref=sr_1_3/102-0580625-9918525?ie=UTF8&s=dvd&qid=1184177242&sr=8-3 .

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The Special Needs Planning Center did not finance the creation of this DVD in any way, provided no financing for their involvement in the video, and does not recieve any compensation for sales of the DVD. The Special Needs Planning Center and The Gifted Learning Project are not connected in any way.

A Common Mistake

2008-01-07T15:00:00.000-06:00

I had to add a quick post today after bumping into an issue this morning that we seem to bump into every week or so. We meet dozens of families each year that have already met with a special needs planner or an attorney and had a special needs trust drafted. The family has done exactly what they felt (thought) they needed... created a trust to provide ongoing care for their loved one with special needs after they are no longer able to provide it.

The problem is this - Just because you have a special needs trust drafted doesn't mean it does you any good. If the attorney or advisor you worked with hasn't walked you through how to title all of your various assets and you haven't either moved most of your assets into the trust, or directed them to the trust through a beneficiary designation or transfer on death designation, you aren't done. I say most assets because there are exceptions, but you need to force your advisor to help you understand what goes where.

This is not an easy task, which is exactly why so many families walk in without having it done. There are a lot of reasons why the titling work hasn't been done. Maybe the advisor doesn't want to take on the responsibility (or additional workload). Maybe you aren't sure how to title your house in the trust. Maybe you had every intention of changing your bank accounts, but just forgot or ran out of time?

Regardless, you MUST finish what you started. If the attorney or advisor that helped you with the trust hasn't helped you finish the job, it is your responsibility to find someone who can.

Guardianship: Is it appropriate for my child?

2007-11-30T13:34:00.000-06:00

As children with special needs approach age 18 (the age of legal majority in most states), many parents are overwhelmed with the new issues that they face as their children become adults.

It's a busy time in your child's life as you deal with new decisions. Should your child graduate now or would it be best to continue school until age 21 (or whenever they are allowed in your state)? How do you make the decision of whether your child should apply for social security and other public benefits? You then deal with the challenges associated with actually getting approved for benefits. There is the concern of how to provide health insurance for your child should he or she no longer be eligible through their current plan.

Maybe though the most frightening issue for many parents are the concerns associated with their child turning 18 and becoming a legal adult, and the lack of parent rights to continue to get information. New issues arise with your child reaching adulthood, such as you no longer having control over their financial issues, the inability to receive information on your child in IEP meetings or from your family physician.

This isn't to scare parents as we all realize that the child will typically invite their parents into their IEP meeting and the family physician, who has been seeing your child for years, typically will keep you tuned in.

It should concern you though that technically you no longer have a right to this information. If your child is 18 and you and your child happen to not be getting along that day, your child can tell you that they do not want you to come into the IEP meeting. If you have to see another physician that day for some reason, or there is an emergency at another hospital, you have no legal right to information.

It is vital that you think through your options as your child approaches age 18 and decide how to best protect your child.

Some organizations will preach to you that every parent of a child with special needs should have guardianship. Other organizations will tell you that no one should have guardianship beyond age 18. I'm here to tell you that both of those statements are wrong, every family is unique, and that your job is to explore guardianship and the alternatives and see what works best for your family and your child.

The legal definitions of guardianship is:

A legal relationship created by a court between a guardian and his
ward--either a minor child or an incapacitated adult. The guardian has a legal
right and duty to care for the ward. This may involve making personal decisions
on his or her behalf, managing property or both. Guardianships of incapacitated
adults are more typically called conservatorships.

Understand guardianship can also be obtained in a limited form, most often limited guardianship over financial or medical matters. If your child is fairly independent, needs your guidance in handling money or making medical decisions, but is independent in other areas, limited guardianship may be more appropriate.

Another alternative to full guardianship is obtaining durable powers of attorney for your children. Durable powers are defined as:

A legal document that allows an individual to appoint someone else (proxy) to
make medical or health care decisions, financial decisions, etc, in the event the individual becomes unable to make and/or communicate such decisions personally.

The key here is that for you to obtain durable powers, your child must be cognitively aware of the authority that they are giving you. However, if this is an option it should be considered.

Ultimately, you need to educate yourself on available options as your child approaches adulthood, likely searching out professional help from an attorney or qualified special needs advisor before making your final decision.

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Adams Burch, LLC 2007 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

How to Support the Organizations That Have Supported Your Family

2007-11-14T14:34:00.000-06:00

As a parent I am always interested in supporting those organizations which support our children with special needs. I hope the following brief discussion with enable you to make better and more informed plans in your giving strategies.

Give today and give cash: As long as the charity is on the IRS Publication 78, the Cumulative List of Organizations, which is an annual list of those charities eligible for deductibility, you can take a deduction for your gift.
A gift of your Life Insurance: If you change the owner of your policy and the beneficiary to the charity you are able to deduct the premium payments and the contribution of the policy itself will be deductible. There are some exclusions so make sure get appropriate professional assistance with making this gift.
Gifting of homes, real estate, rentals, ect: You can always leave real property to your charity of choice and receive the full deduction. We have had several families who have structured a gift where their child with special needs has lived in the home during their lifetime and the home was then gifted after their child has passed. This ensured a stable living arrangement for the child and also provided much needed revenue for the charity after the child no longer needed the home. It was a win-win for everyone.
CRUTS, CRATS, Charitable Gift Annuities: These are more complex ways in which you can make a present gift and receive income during you or your family’s lifetime. The tax benefits vary with age, duration of payment, type of funding ect. However, if you are looking to increase your current income and wanted to make a gift at the end of life to a charity these can be wonderful tools, in which you receive some great tax benefits and the charity of choice receives in effect the left over amount at your death or after a fixed period of time.
Donor advised funds and foundations: These are great ways for you to manage your assets, leave a legacy of giving and help the next generation learn about giving back. The amount you are thinking of gifting will determine which is more appropriate.
Pooled income fund: You put funds into a pool that operates like a mutual fund but is controlled by a charity. You get a share of the actual net income generated by the entire fund for life, after which your share of the assets is removed from the pooled fund and distributed to the charity. You get an immediate income tax deduction when you contribute the funds to the pool. The deduction is based on the value of the remainder interest you had in the fund.

The first thing you must decide is if you are willing to give now, later or both. Then look at what you want to accomplish. Determine if you want to help with endowment funding, start a scholarship, send a child to camp every year, buy technology or contribute to the general fund of the charity. Having a clear idea of what you want to accomplish is critical to your feeling secure and pleased with your gifting plan. Many of us give with out a plan or any real direction and can miss out on better deductions and possibly making a greater impact for the charities which we support.

Submitted by: Scott Adams, CFP - Co-founder of The Special Needs Planning Center and the parent of 5 children, three of which have special needs. Scott may be contacted at sadams@specialneedskc.com

Professionals You Need Involved in Your Special Needs Plan

2007-11-01T17:20:00.000-05:00

This should be the easiest post I ad, because the direction to families is so clear, yet this is the part of the advice we provide that families choose to attempt go without, often at the expense of their childs care. You MUST get some people involved in your childs plan in order for it to be done correctly. You CANNOT attempt to go this alone and hope that you do it right. Too much is at risk.

The central figure to any special needs plan should be your child, as they are who this is for. Secondary to that is you, the parent. You are the ones ultimately responsible for the plan being implemented correctly, and you are ultimately responsible for putting the people in place to ensure that your child continues to receive quality care even after you are no longer here to provide it. No one knows your child better than you.

Beyond that you must include two professionals: an attorney that specializes in special needs planning, and a qualified advisor that solely works with families developing and implementing special needs plans. You cannot use standardardized legal forms and hope that the special needs trust is correct. If you only spend $100 on the documents ordered online, you are getting what you paid for. Cookie cutter documents that are not catered to the needs of your child. Even if you are fortunate enough that the documents are correct the first time, the document is not going to update itself. Without someone involved that will take the responsiblity to contact you when rules change your documents will ultimately become obsolete.

You also cannot use the typical financial advisor to coordinate your plan. There are literally thousands of qualified, ethical advisors to help families plan for their financial future. Most likely, you are already working with one. There are not however many qualified, ethical advisors that are well versed in special needs planning. Any advisor can research the subject and attempt to guide you through the maze, but unless they can bring the experience of working with hundreds of special needs families each year to the table then you need to search out another advisor.

Bottom line: Do you want an attorney or advisor to "cut their teeth" and learn how to do special needs planning on your child? If not, take the time to find an attorney and an advisor that can help you, based on years of personal experience, develop the plan that helps provide the same level of continous, quality care that you want for your child.

How do you find these people? It is not by calling around to various law firms and financial advisors. Most firms will tell you that they can do it, or have someone that can. Talk to other parents. Call your case worker. Check the publications you read and see who is providing information to you. Not advertisements, but information. Who is providing free seminars on the subject without selling you a book or CD at the end of it. Do the work, your child deserves it.

Special Needs Trusts, Part 6: Ideas you can use

2007-10-15T17:18:00.000-05:00

In the final post in the current series on special needs trusts I'm going to provide a list of some ideas you can use, and likely should use, when creating your special needs trusts and families estate plan. The key is to think outside the 9 dots and get creative. A qualified attorney is going to take care of the logistics, but it is your job to create the best environment for your children possible because you are the only one that knows them well enough to do it!

Name a contingent trustee - I realize that it is often difficult to find someone you know and trust &/or a qualified entity to be the trustee of your trust, but if you are lucky enough to find one and can some how come up with a secondary option it can't hurt. If something unfortunate would happen and the named trustee predeceases you or they are for whatever reason unable to accept the responsibility because of something happening in their own life at that time, having a contingent trustee named can be vital.
Name a contingent guardian - See above! You may have the perfect family willing to be the guardian of your children, but what if it's 5 years from now they have 3 young children of their own and cannot do it, or they choose to relocate for their career and it is important to you that your children stay local because of family or school? If you can name a contingent, do it.
Get creative! - One of the more creative things we have seen a family do is leave instructions (and funds) in their trust that the trustee maintain 4 season tickets for the Kansas City Chiefs. Why? They instructed that the first ticket is to be used by their son who is in a group home. The second ticket is for their son to invite a friend to attend each home game. And the 3rd and 4th tickets are for......him to invite two caregivers from the home he lives in. Again, why? It was their belief that by their son having those two tickets it may improve the attention and care their son receives. I am not commenting on whether or not this was moral or right, but it obviously shows that they thought outside the 9 dots to provide something unique for their son. The unintended results of this were that he now loves the Chiefs and follows them religiously, leading him to begin reading the sports page each morning when before he hated reading. He's also able to carry on an adult conversation with people, as we all know pro football is a completely acceptable and common topic of discussion, even though before he was hesitant to be social with people he wasn't comfortable with. Be creative!
Until you have assets to fund the trust, consider a temporary, but certain asset - Each child's need for assets will be different, but regardless what their need is it is your responsibility as their caregiver to attempt to determine and provide that amount to the best of your ability. Remember, most anything can be left to a special needs trust, but not everything should be left to a special needs trust. If you don't project that your assets will outlive you so that their is something left, consider alternate means to provide a liquid asset directly to the trust such as life insurance.
Think through if you want family involved or not - Some parents want other children to be involved as their son or daughter with special needs guardian or trustee. Other parents are not comfortable leaving their children that responsibility. There are not right or wrong answers, but this needs to be thought through carefully. Let's assume your son lives in Boston, is 29 years old and has 3 young children of his own. Do you want him to be the guardian of his brother who is 35 years old and lives in Utah? I'm not saying it doesn't work, but it has to be thought through. In every instance there needs to be an open and honest conversation with the future guardian and caregiver, for every one's sake.

Where are the best sources of information to help you create a trust unique to your son or daughters needs? First and foremost force the attorney you choose to work with to help you get creative. Ask them to share ideas with you that they have seen other families use. Remember, the attorney you choose to work with should commonly draft these types of documents and be able to guide you through the process. Also, search out adviser's and planners that work specifically with families with children with special needs. Finally, ask other parents that you know have done this work for their child if they would mind sharing with you anything they feel you need to know.

Special Needs Trusts, Part 5: You know you need a special needs trust so where do you start?

2007-10-01T17:02:00.000-05:00

Over the last few weeks we've covered what a special needs trust is, the various types of special needs trusts, how to fund a SNT and who participates in a SNT. We can safely say at this point that the subject is often confusing and at the very least difficult to start. Fortunately this is the easiest part of the process to cover because it is the one thing that is absolutely clear: You shouldn't go it alone!

In each families case, unless you happen to be a trust attorney that does 5 or more special needs trusts per month, you need help. You want this done correct the first time to save you time and money, and your son or daughter needs this done right the first time for their own protection. They are dependent on you to make sure this is done right and you have an obligation to get it done for them.

Where to start? - Get professional guidance. Although this would be a rare event, in the instance where you believe your entire special needs plan is in place with the exception of the legal work you'll need to get a referral to an attorney that either specializes in special needs trusts or does a minimum of a few every month.

If the balance of your special needs plan also needs help you should start with a special needs planner, typically a Certified Financial Planner (CFP) that does nothing but special needs planning. Admittedly these are rare, but if you research the matter you will find that there are qualified advisors that do nothing but special needs planning scattered throughout the country. This advisor should be able to provide the following:

show a history of working with families that have children with special needs
provide references to other families with special needs that work with them
have professional designations showing that they take their work seriously
preferably be a fee based firm or have the ability to charge fees based on the families needs
preferably be an independent firm that is not required to utilize a certain companies products, or be compensated differently to use their own employers products.

I'll argue that even if the closest advisor is 3 or 4 hours away you owe it to your child to go to someone that specializes in this type of planning.

Their are 5 key things you'll want to make sure the advisor can provide you:
1 - Prepare you for the meeting with the attorney by answering your basic questions so that you are not sitting on the clock asking questions you can have answered before the meeting
2 - Help you come up with your guardians, trustees, and other needs prior to the meeting - again to keep you off of the clock
3 - Help you consolidate all of your financial information into a format that the attorney can use, which saves the attorney time and should result in a lesser fee
4 - Provide you a referral to an attorney specializing in this type of work
5 - Following the completion of your legal work help you to coordinate it with the rest of your plan. This includes direction on how to adjust the ownership of family assets, as well as adjustment of beneficiary designations to reflect the existance of the trust.

Using our firm as an example, not only do we provide the 5 key services above, but we have worked hard to find qualified attorney's in our area to help with this planning and have worked with them to reduce their base fees for the benefit of the family. In most cases this results in $1,000 or more in savings off of the attorney's fees because we have done the initial work for the law firm. The advisor you choose to help you with this planning should be attempting to do the same for you.

If your current advisor cannot do these things and you have a child with special needs you may want to consider bringing another advisor into the fold. That is not meant to be a negative reflection on your existing advisor who is likely a competent and ethical advisor, but you don't go to your general physician for heart surgery do you? You owe it to your child and your entire family to go to a specialist that can make this process as manageble, comfortable and affordable as possible.

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For more information on The Special Needs Planning Center or its two founders go to http://www.specialneedskc.com/ . You may contact Heath Burch directly at hburch@specialneedskc.com .
Adams Burch, LLC 2007 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

Special Needs Trusts, Part 4: Who are the participants in a SNT?

2007-09-13T16:21:00.000-05:00

If at this point you are thinking a special needs trust may be appropriate for your family it means that you now have to begin thinking about who may best be able to carry out your wishes outlined in the trust. In this post we'll define the participants in a trust and differentiate between a general trust and a special needs trust.

General Trust participants

Grantor - This is simply the person (or persons) that creates the trust. The grantor may also be referred to as a trustor or settlor.

Trustee - This is the entity or person that holds the responsibility of carrying out the direction of the trust. It can be either a person or corporation and is specifically appointed by a grantor or the court in case the grantor appointed trustee is unable or no longer living. Note: The trustee in a general trust may name themselves trustee, but not in a testamentary trust as we'll discuss below. Their responsibility is to oversee all trust property and administer it for the benefit of the beneficiary named by the grantor by the trust.

Beneficiary or beneficiaries - Also referred to as the grantee, this person (or persons) are the benefactors of the trust.

Special Needs Trust Participants

Grantor - The grantor, defined the same as above, is generally the parents of the child with special needs. This is not always the case, but the most common example would be parents establishing a special needs trust to distribute assets for the benefit of their son or daughter following the parents death. In many cases these trusts are testamentary trusts (as discussed in previous posts).

Trustee - For special needs trusts this is the person who is responsible for the oversight of the assets left to the trust, as well as the person responsible for releasing funds for the benefit of your son or daughter with special needs. This job is extremely important as they hold the responsibility of releasing funds to provide what your son or daughter needs, without doing something that would jeopardize your son or daughters benefit eligibility. Remember, the trusts purpose is to supplement, but not supplant government benefits.

Beneficiary - For a special need trust there is one beneficiary. Not including pooled trusts (again, discussed in previous posts) each special needs trust should have a sole beneficiary. This means if you have two children with special needs, you'll need two special needs trusts.

In part 6 of our special needs trust posts we'll pass along ideas you can use when creating your special needs trust.

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For more information on The Special Needs Planning Center or its two founders go to http://www.specialneedskc.com/ . You may contact Heath Burch directly at hburch@specialneedskc.com .

Adams Burch, LLC 2007 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

Special Needs Trusts, Part 3: How do you fund a SNT and how much money should you leave in the trust

2007-09-04T13:23:00.000-05:00

For those of you that either currently have a special needs trust, or who are now going through the process of developing one, you likely have faced a challenge in completing the process. When working with the financial planner, attorney or other professional who is helping you with this and looking to find the answer to how much to leave into a special needs trust, you may have found it difficult to get clear guidance. The reason - there is no clear answer and may not even be a right answer.

In a traditional financial planning role an advisor can sit with you and based on factors such as your retirement income goals, investment return assumptions, planned retirement age and expected mortality can help you determine how much you'll need. Ideally, you'd have enough to retire comfortably and then whatever is left after the parents are gone is divided between children, charity, church, etc. There are hundreds of financial software packages and websites that can help you through this process.

Our familes are different - When a special needs trust is placed into the equation there isn't software designed to help you extend your financial plan beyond your lifetime. Sure, if you know exactly what you want to leave in a special needs trust, say $500,000, the software may sometimes be manipulated, but how do you arrive at that number.

We all would agree that every family dynamic is different due to each individual with special needs unique needs. How do you place a dollar value to the quality of life you would want to provide for them after your death, taking into consideration the available state benefits? We've spent 6 years working with families trying to arrive at comfortable numbers and the only way to do this is to attempt to work backwards.

To create an example lets assume an individual is age 18 and currently receiving benefits. Lets then assume the individual is still living at home with their parents, receiving SSI equal to $628 per month, as well as a monthly stipend of $30 (remember to maintain eligibility federal guidelines restrict them to $2,000 of assets). In this instance the parents are faced with the challenge of planning to provide for their childs needs above and beyond what the state is providing.

To start you must first attempt to plan where your child would live. Would they live at home or with another family member or caregiver where they would have an expense for food and shelter, or would they live in a community facility where their SSI would go to the facility for living expenses. Beyond the basic shelter and food needs that government benefits are designed to provide the following questions need considered:

Are there medical expenses that are not typically covered by medicaid that are necessary? An example of this would be allergy medication or assistive devices that are not covered by insurance.
What social activities are important to your child that you would want to ensure continues? Examples might include annual vacations with siblings or baseball games.

Does your child enjoy going out to eat with friends or going to movies?

Are there things such as computers and computer games, DVD's, video games, etc that improve your child's quality of life?

After you have listed out those things that you would want your child to continue to enjoy you will want to put a monthly figure to this number. Take your time coming up with this monthly amount. The easiest way to do it is to keep track of everything you spend on your child over the course of the month. After you have that amount go back and add in periodic expenses that might come up quarterly or annually.

Let's say that that number you arrive at is $1,000 per month. This is effectively saying that in addition to the SSI benefits and medical card our child needs $1,000 per month to live a quality of life that compares to what they are provided now and that would meet our families expectations. Once that number is agreed upon you'll need to get a financial professional specializing in this type of planning to help you arrive at the dollar amount today that needs to be put away to create an income stream equal to your monthly goal. There are numerous variables and assumptions that will go into this calculation, including what investments will be utilized, what inflation rate is appropriate (very important to remember), etc.

Last issue - Whether real estate, savings, mutual funds or retirement plans most assets can be left to a special needs trust, but not all assets should be left to a special needs trust. When finalizing your families plan you must include a professional in this part of the planning. Whether it be a Certified Financial Planner, CPA or attorney please confirm that this person is versed in special needs planning and is involved in multiple plans per year. He or she must understand the taxation of the various assets left to the trust and should be able to provide education to both you and the trustee of the trust who will ultimately be responsible for carrying out your wishes.

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For more information on The Special Needs Planning Center or its two founders go to http://www.specialneedskc.com/ . You may contact Heath Burch directly at hburch@specialneedskc.com .

Adams Burch, LLC 2007 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

Special Needs Trusts Part 2: A Summary of the Different Types of SNT's

2007-08-14T12:23:00.000-05:00

Part 2 of our Special Needs Trusts (SNT) series will cover the general types of SNT's. This isn't information on which type of trust works in which state or what situation calls for what trust, but a basic summary of the types of trusts you will hear about and some basic terminology you'll need.
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It's difficult as a parent when you are making decisions that will affect your families future as much as special needs planning will, because so much of it is new to you as a parent. Most (except for those of you with a legal or advisory background) are never exposed to the different language you most learn when your family begins to determine if a SNT is an appropriate planning tool for your family.

When it is actually time to act and start having legal documents drafted designed to protect your child with special needs, it can be overwhelming. While it is your responsibility as a parent to make decisions that you believe are in the best interest of your child (and entire family), I'm here to tell you that you are going to have to put your faith in someone to help. For you to be able to make these important decisions someone has to step in and provide you with your options, including the advantages and disadvantages of each of the options.

I am not going to provide you advice in this post that will enable you to meet with an attorney today and get your documents drafted because I cannot. Each and every family we serve is uniquely different. Each of you live in different states, have differing economic backgrounds and means, have children with different needs, etc. What I can do is try to provide you with a basic understanding of the different types of special needs trusts. This isn't intended to provide you enough information to know what is suitable for your family, but hopefully I can provide you enough of a basic understanding to be able to have a worthwhile conversation with the attorney that you select to work with you on this extremely important manner.

Family, Pooled and Court Ordered Special Needs Trusts

Family Trusts - A family trust is the most common special needs trust and is as it sounds. These trusts are set up by family members, most often parents (who are often the ones ultimately funding these trusts).
Pooled Trusts - Pooled trusts vary in that anyone can put money into a pooled trust, whether it be parents, grandparents, aunts/uncles or family friends. Disabled individuals themselves may even have their own funds directed to these trusts when appropriate. Pooled trusts are established by non-profit organizations and can be found in most states. In Missouri for example the most common is The Midwest Special Needs Trust. These trusts are often established as medicaid payback trusts, meaning that assets left over after the disabled individuals lifetime revert back to the state to offset the benefits the individual received through medicaid. There are many advantages and disadvantages to these types of trusts that should be discussed with your attorney or advisor.
Court Ordered Trusts - These trusts are most often used when the disabled individual has received a court settlement. There are many restrictions as to who can set up this type of trust, but the most common use is to allow a disabled individual to have money directed from a settlement they receive into these trusts to allow the funds to be used to supplement governmental benefits and maintain eligibility for these benefits.

Testamentary and Stand Alone Special Needs Trusts

Stand Alone Trusts - These trusts are established and funded today (meaning they will have money in them current day).
Testamentary Trusts - These trusts are drafted and decisions are made today, but are not actually funded until some triggering event occurs. A common example would be parents establishing a testamentary special needs trust that at the second parents death will be funded with a portion of their estate to provide care for their child with special needs.
Note: In some states stand alone special needs trusts have come under scrutiny, resulting in testamentary trusts being the more common choice. Make sure the advisor you are consulting with understands the difference and is able to guide you in your decision.

Third Party and Self Settled Special Needs Trusts

Third Party Trusts - These trusts are established by someone other than the disabled individual, such as a parent or grandparent.
Self Settled Trusts - These trusts are established by the disabled individual themself.
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Please remember that the above information is not legal advice or direction as to which trust is appropriate for your family. It is only intended to provide you a brief overview of some of the terminology you'll encounter as you go through this process, as well as provide you some basic knowledge of the basic types of special needs trusts. In every instance you should consult an attorney with experience in drafting special needs trusts to help you develop your families plans.

Next time we'll get into how you fund a special needs trust and how much might be appropriate to leave into a SNT.

Special Needs Trusts, Part I: What is a Special Needs Trust?

2007-07-23T15:21:00.000-05:00

It has been our experience that as the parent of a child with special needs you will do whatever is necessary to care for your child. But at your death how do you continue to provide the supplemental resources that allow your son or daughter to continue to live a fulfilling life?

The Special Needs Trust (SNT) is arguably the most important planning tool available to families with children with special needs. Although many of the families we work with each year come into our office having heard of special needs trusts, they are often unaware of what these trusts really accomplish, more importantly what they protect. They may have been told they need a SNT at some point, but they often have not been given the reasons why. Over the next few weeks I'll attempt to address the following issues surrounding special needs trusts:

Part 1 - What a SNT is, what it is for and what it can & cannot provide

Part 2 - A summary of the different types of SNT's

Part 3 - How do you fund a SNT and how much in the way of assets should you leave to the trust

Part 4 - Who are the participants in a SNT

Part 5 - You think you need a special needs trust so where do you start

Part 6 - Special needs trust - Ideas to use.

Before I get into this topic please note that I am NOT an attorney and I am not qualified to draft legal documents. Our expertise is purely driven from the interaction with hundreds and hundreds of special needs families and from working with attorney's to help these families prepare their plans. You should always consult with an attorney to have your legal documents drafted and you should consult specifically with an attorney that has experience in drafting special needs trusts (more on how to choose an attorney in a later post).

Part I

Before we discuss what a special needs trust is specifically lets briefly discuss what a trust is without the legal jargon. As simple definition of a trust I've found (as defined at http://www.mscf.org/) is that a trust is a legal device used to set aside money or property of one person for the benefit of one or more persons or organizations. In otherwords, a trust is simply a legal document that is drafted to own and ultimately distribute assets from one to another. Think of it as an empty box that can hold ownership of most assets (including investments like stocks and bonds, cash, real estate, collectibles) that allows the grantor (person setting up the trust), when properly drafted, to avoid probate and distribute assets as they intended. It essentially allows you to see your assets distributed as you wish, although you aren't here to distribute them.

Trusts can be used for various reasons, whether it be to aid in tax savings, divide a families estate among children, carry out a charitable plan, or in this case provide support for an individual with special needs. SNT's can be set up in many ways, but often they are structured for parents to leave assets at their death that will be used to provide ongoing support for their child with special needs (this is not always the use and we will discuss variations in future posts).
A SNT is a tool used to hold assets to supplement governmental benefits for an individual with special needs. The key is that these trusts supplement, but do not supplant benefits provided through social security and the state. If you take nothing else away from this, remember - they supplement, but are not to supplant government benefits. Federal guidelines dictate that an individual with special needs over the age of 18 who receives social security income (key: SSI, not SSDI) cannot have assets in excess of $2,000. Note: $2,000 is the federal guideline, but states can take a more stringent stance - Missouri for example sets the guideline at just $1,000).

Understanding this limitation is placed on individuals in regards to the amount of assets they can own, families are left with the challenge of finding a way to supplement their child's future needs. Lets assume an example where a disabled individual over the age of 18 is receiving the full social security monthly benefit amount (in Missouri around $628 per month). This income is essentially supposed to provide food and shelter, so to maintain this benefit the individual cannot be provided free shelter or food while receiving this monthly benefit. Note: Individuals living in group environments or paying rent if living with parents or a family member are in a different circumstance...I'll handle questions regarding this offline if necessary.

In addition to the SSI benefit the individual may also receive a monthly stipend for additional expenses (often times in Missouri this is around only $30!). Think of all the 'things' your son or daughter needs and enjoys each month the are necessary to provide a minimum level of comfort: CD's and DVD's, computer games, going to the movies or out to eat with friends...and more essential needs like asthma medication and toiletries. This is what a special needs trust accomplishes: it allows monies to be set aside specifically to provide these supplmental resources, while not distrupting the critical state benefits. Remember, you cannot leave money directly to the individual because of the $2,000 asset limitation placed on them. As stated, you as a parent or caregiver will do your best to provide what your child needs, but if you aren't here to do it a SNT can step in your place.

(We didn't even discuss the most important benefit of social security and state benefits in most cases - medical coverage. To some the monthly SSI income discussed above is critical, while to others it is not overly significant. As many of our families have unfortunately experienced medical coverage can be critical to any family regardless of their financial resources. If for no other reason it is important for individuals who may not be able to obtain medical coverage on their own so to maintain benefit eligibility so that they have medical coverage.)

In summary of Part I the issue is this - For an individual over the age of 18 who is receiving these critical state benefits, like social security and medicaid, they cannot maintain assets in their name over $2,000. For a family to help supplement the individuals needs while not disqualifing them from receiving these benefits a special needs trust is often part of the solution.

Next time we'll discuss the various types of special needs trusts, including third party and self settled trusts, as well as family, pooled and court ordered trusts. A different SNT is used when the disabled individual needs to shelter personal assets(via a settlement for example), when a family is wanting to leave assets at their death to the child, or when a grandparent for example wants to offer current day supports. We'll get into these issues in our next post.

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For more information on The Special Needs Planning Center or its two founders go to http://www.specialneedskc.com/ . You may contact Heath Burch directly at hburch@specialneedskc.com .

Adams Burch, LLC 2007 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

An Instruction Manual for Parents

2007-07-05T11:10:00.000-05:00

When you first learned of your child's diagnosis were you handed an instruction manual telling you everything that you would need to know about your child? I'm not just talking about information specific to their diagnosis, although that would have certainly saved you countless hours of searching out knowledge, but what about the numerous quirks your child has that they've had to teach you over the years? What about the activities, treatments, etc. that have benefited your child and just as importantly the ones proved to not be worth your time (or money)?

In your family is there a schedule that you follow each and every day to ensure that your families day goes well? Maybe there is a certain time you eat breakfast and a specific cereal your child likes that if you deviate from can upset the entire day? Just think through a day in the life of your family and the calendar you tend to repeat.

There are so many different things you've learned over the years about your child that if only you knew them when you first brought them home things would have been easier. Isn't it your your obligation as a parent to make sure you do everything you can to prepare the next guardian of your children (this really goes for all children, not just those with special needs)?

Look at it this way: It isn't uncommon in many families that have a child with special needs that one of the parents stays home to care for the child's needs, while the other is working to support the family. In this scenario it might be difficult for the parents to trade roles for a week and for the parent working outside the home to keep up with therapies, medications and schedules...so how can we expect someone else, no matter how involved they are in your families life, to step in and not disrupt the child's life worse than it already has been considering they've just lost a parent(s). If your spouse is at work every day do you think they could step in and replace you for a week and really know what they are doing? That isn't saying they are a bad parent or that they are not involved and don't care, but just think through all the things you do!

How do we accomplish preparing the next guardian the best we can? Before we get to the "instruction manual" lets cover two important issues that we'll discuss in detail in future posts. First, the conversation with the future guardian of our children has to be an open, honest and thorough conversation. They have to be fully aware of the important responsibility they are signing on for. It can't be a brief conversation simply asking, but not preparing, someone to care for your children in the event you can't.

Second, they have to be assured that you are standing up to your obligation to financially support your child, even if you are no longer around. Whether it is through adequate savings, life insurance or some other means isn't it your moral obligation to provide for them?

Now to the instruction manual. These have been referred to as A Letter of Love, a Letter of Intent, or as we refer to it A Continuity of Care Plan. This document is something that you draft PRIOR to asking someone to be the guardian of your child so that they understand the responsibility. It is a fluid document that should be updated periodically and then ideally resent to the guardian so that they remember what they've signed on for and can confirm they are still up to the obligation. Wouldn't you rather know while you are here and can adjust instead of after you aren't here to do something about it?

What should a continuity of care plan contain? There is no all-inclusive answer, but it should cover what you would like to know if you were to begin caring for someone else's children. Some items might contain:

a personal letter to the guardians

a daily schedule broken down by the hour as to what you do (should be completed for all seven days of the week)

activities the child enjoys and doesn't enjoy

important people in the child's life (friends, relatives and others that would be important to keep in the child's life)

contact information for doctors, therapists, nurses, educators, etc

diagnosis information, including dates, tests, procedures

medication history

parents beliefs - spiritual, moral, and other

where would your child live if their guardians had to step in (your home, the guardians home, a group home)

a copy of the child's most recent IEP

child's hobbies, likes and dislikes
financial information, including contact information for the financial advisor versed in special needs planning that your family uses

This list is really not meant to cover everything, but to give you a starting point. You may also obtain a more complete sample by contacting The Special Needs Planning Center through their website at http://www.specialneedskc.com/ .

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For more information on The Special Needs Planning Center or its two founders go to www.specialneedskc.com . You may contact Heath Burch directly at hburch@specialneedskc.com .

Adams Burch, LLC 2007 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.

Our Task: To Educate Parents

2007-06-21T11:42:00.000-05:00

Welcome to the first Special Needs Planning Center post. Our goal is simple - to educate parents on the various obstacles they'll face that are unique to families of children with special needs. Every couple of weeks we'll work to post information for parents to help them navigate through the various challenges they'll face in planning for the future of their special needs child. It's clear to the families we serve that there is a severe deficit of information for parents hoping to plan for their child's long-term future and parents certainly aren't given an instruction manual when they bring their child home for the first time.

We'll also be available to answer questions that you have regarding any of the topics we discuss or any related topic. Just post a comment or email us directly and look for our reply.

Whether you are looking for a medium to interact with other parents, information on how to prepare for your child's first IEP or need to understand how your child qualifies for benefits such as social security, our hope is to help you find the information you need. We'll post on various topics (and always be open to suggestions from the people we do this for, the parents). Some of the future posts will include:

- The First Drive Home after Diagnosis
- Where do I find local supports?
- What benefits are we entitled to?
- Who will care for my child if I'm unable or no longer here?
- How will having a special needs child in the home affect my other children?
- My child is turning 18: What do I do?
- Guardianship: Is it appropriate for my child?
- The Special Needs Trust: What is it and does my family need one?
- We're getting ready for our first IEP, what do we do?

We are not going to be your sole source for information...no one is. However, our practice has interacted with thousands of families since 2000 and works directly with hundreds of families annually helping them to plan for their child. Our hope is to be able to pass along our experiences and resources to shorten the learning curve for parents.

For more information on The Special Needs Planning Center or its two founders go to www.specialneedskc.com . You may contact Heath Burch at hburch@specialneedskc.com .

Adams Burch, LLC 2007 - This site should not substitute personal professional, legal or medical advice in any way. The accuracy and personal applicability of this information is not guaranteed.