thespecialparent.comSpecial People Parenting Special Kids

First of all – Happy St. Patrick’s Day!! As a proud irishwoman I can’t let the day go by without acknowledging it!

Today I wanted you all to become aware of a piece of legislation introduced by former presidential candidate Senator Chris Dodd. It is called the Disability Savings Act of 2008. According to Senator Dodd’s website the purpose of this Act is:

To encourage individuals with disabilities and their families to save private funds for disability-related expenses to supplement, not supplant, benefits provided by other sources (including Medicaid and private insurance) so that people with disabilities can maintain health, independence, and quality of life.

These accounts would work similarly to a 529 plan. It allows family members to put aside money to supplement care needed for education, medical services, job training and transportation. The money saved in this program will not jeopardize government program support for individuals with special needs.

With a cap of $1 million Disability Savings Accounts (DSA’s) will have certain tax benefits as well:

• Funds expended from the DSA for specific services such as education, medical services, employment training and support, transportation, and other related services will be tax-free.
• Interest on accounts with a balance of $250,000 or less is tax free.
• Low income earners will receive a refundable matching tax credit of up to $1000 for their contributions to the DSA.

Funds from college savings plans and special needs trusts for the same beneficiary can be rolled into the DSA without penalty.

The theory is that these accounts would be far easier to set up than say a Supplemental Needs Trust and therefore make available an avenue for planning for special needs individuals without the need to consult an attorney which can be cost prohibitive. Disability would be determined by the Social Security Administration or the Disability Determination Service of a state and would have to be under the age of 65.

Senator Dodd acknowledges the difficulty of passing a piece of legislation like this during an election year. He told the people gathered for this announcement that he needed a co-sponsor from across the aisle (meaning he needs a Republican) and that he needs significant support. Actually he said he needed an army of supporters and then added “And you’re my army”

He absolutely does need an Army if we stand any chance of getting this legislation passed. Be a part of the army. If you have a US Senator representing you that is Republican, suggest they support this by co-sponsoring this important piece of legislation. Regardless of who represents you in the US Senate (you can find out at votesmart.org) contact them asking them to support this incredibly important piece of legislation.

I’ll update you as I can regarding it’s movement through the Senate. Seems to me it only benefits everyone to have this passed. Let’s start marching forward now!!!

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…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

Gymnastics Classes Bring Learning, Fun To Those With Special Needs
Gymnastics and Exercise class for children age 3 to high school give children the opportunity to participate in classes the exercise their minds and their muscles.

Disability Awareness Week
Idaho State University organizes a week of events to build awareness and create better understanding of people on campus and within the community.

Families to hold toy swap for special-needs children
A group of parents wanting a setting to hold a toy exchange for families of special needs children may have a larger event than originally planned.

Madison County special needs students to participate in ‘Big Hearts’ Pageant
The Extra Special People organization hosts and pageant spotlighting the abilities of people with disabilities.

Homeland Security Funds Grant for Special Needs
A federal Homeland Security grant is making emergency planning for people with special needs possible in this county.

For teen star of ‘Breaking Bad’, real-life disability is no obstacle
RJ Mitte provides unique authenticity to the disabled character he plays on AMC’s edgy new series Breaking Bad (Sunday, 10ET/PT)

For some parents, the emotional strain is greater
Dr. Rachel Bryant discusses the stages of mourning in relation to parents of children with special needs.

A first for Noelle; Schools’ behavior specialist honored for her work
District behavior specialist Noelle Neault honored for her outstanding work with youngsters in the Hanover Public School District.

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Yesterday morning on the Today Show I saw video of a man being just dumped out of his wheelchair by an individual who appeared to be a police officer. I was so shocked I paused the TV so that I could finish dealing with the morning din of school readiness and revisit this show because surely my eyes were playing tricks on me.

Shoes tied, meds taken and appropriate outdoor gear selected, I went back to the paused TV. Unfortunately, I wasn’t seeing things. Indeed before my very eyes was a man in a wheelchair who was being dumped and all I had to do was read the headline below – CAUGHT ON TAPE – Deputy dumps man from wheelchair to know it was all to sickeningly real.

I sought out the video online and found the article at MSNBC (as I would expect given that I saw it on the Today Show) I re-watched it a few times. It was if I still couldn’t believe it – even with people spelling it out for me step by step. There is somewhere that someone – well heck more than one person felt that treating this individual – prisoner or no – in this manner was so acceptable, so typical that not only is there no apparent reaction (certainly none that I can see on this video) to this by other co-workers standing by and participating but not a single report of this incident was filed.

I read some comments over the net which just disgusted me. This individual, Brian Sterner, is paralyzed from the chest down and identifies himself as a quadriplegic although he has some use of his arms – so someone suggests he’s getting more pity than he should because he’s misidentified as a quadraplegic as opposed to a paraplegic. Aside from the fact that I think that statement is false, please somehow how much of him is paralyzed is relevant to whether the action was justified??? Someone else suggested that this individual somehow deserved this type of treatment because he was in the custody of the police. Have we as a society lost our collective minds???

While I certainly don’t want riots in the street a la Rodney King I sure as heck would like to see some righteous indignation in the State of Florida and some swift action on the part of people in power down there. With power comes responsibility. I am not talking just about taking legal action against the sheriffs involved in the incident – that’s just the tip of a huge iceberg. People with power and responsibility need to make changes – both in education and mindset.

Sensitivity training is obviously in dire need – and to be fair, probably not just at that sheriff’s department….although it’s obviously a good place to start. People in positions of power need more education on disabilities. They need to understand the difference between someone suffering from psychosis vs. someone being aggressive. They need to learn ways to err on the side of caution. They need to understand what someone who has alzheimers or dementia acts like and how to handle those situations. They need to have procedures in place that accommodate individuals who need assistance with activities of daily living during their incarceration. Just because you are in jail doesn’t mean you lose the right to live with dignity.

Cruel and unusual punishment as forbidden in our eighth amendment has also been further defined by the Supreme Court as “a punishment that must not by its severity be degrading to human dignity”. I certainly think being dumped out of one’s mode of ambulation could be reasonably considered degrading to human dignity. If those in power remembered those powerful words – better yet – all of humanity remembered those powerful words of human dignity before speaking or acting it might be a better world.

I can only hope for my daughter’s sake and all our children, that we each take a step to assure the preservation of human dignity in our own lives on a daily basis. Each one of us needs to step up in situations where those other officers failed to and speak out when we see an affront to human dignity. When I see Brian Sterner get thrown out of his chair, I see my daughter being mistreated for her inability to perform something an officer asks her to do or swing at the officer because she believes they are the voices harassing her in her mind. It sends a lightning bolt of fear down my spine the very real thought of what could happen.

Today is just another day. But it can be a day towards a better tomorrow if we each commit to upholding human dignity. I think that’s what Brian Sterner was saying when he told Meredith Viera:

“It can happen to anybody at any time. Hopefully, that’s what will come out of this, that this negative way of dealing with life and people will change.”

It’s my hope too.

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…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

Boo-Boo Helps Children in Unexpected Ways
A Putnam County NY teacher applies to have a therapy animal for her classroom with spectacular results

Parent Group Faces Tough Times
A parent group in Maine faces funding cuts from the state which may force this program that helps get special needs parents the help they need.

A Hidden Shame: Death in Georgia’s Mental Hospitals
Death of 14 year old Sarah Crider just one of 115 in the state’s care that might have lived if not for neglect

Woman Wins Round in Disability Case
A mother of a disabled son forced to resign as a legal secretary in 2005 after not being given the same flexibility as other staff with non-disabled children won the latest round in a legal battle that could bring new employment rights for millions in Britain.

Program Helps Special-Needs Students
Program in Salem, OR area address basic life skills and apartment-living needs for special students age 17 and older, including real life experience at independent living.

Vouchers Help GA Kids with Special Needs
A publicly funded scholarship program for special-needs children has almost 1000 students participating in it’s first year with parents calling for continued expansion of this program

Humane Society Seeks Home for Special-Needs Puppy
Kansas Humane society seeks experienced dog owner to nurture a special puppy “Silence” that is deaf and partially blind.

Their Rite of Passage
Boston area class gives special-needs students lessons on bar, bat mitzvahs.

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Some of you are pretty new to being involved in the crazy maze of special needs parenting. When I first had my daughter Katherine and needed to understand medical terminology, I had a small hand up because I was an Emergency Medical Technician. This meant that I had some basic understanding of medical terminology, anatomy and first aid procedures. It came in handy. Not everyone is quite that fortunate. However by the time we got into physical therapy, occupational therapy and later on schooling, I was lost for quite some time. I used to joke that someone should have given me a dictionary to decipher all the alphabet soup that was being used to tell me things. Things I wanted to understand and needed to understand.

As I was researching information for an upcoming post, I stumbled upon that very resource. I’m pleased to announce that I have received permission from the source to repost The Dictionary for Parents of Children with Disabilities for your use. Special thanks go out to the South Dakota Department of Education/Special Education Programs who originally developed this resource for their kind permission to share this extensive resource with all my readers and the Sanford School of Medicine Center for Disabilities at the University of South Dakota who is in the process of updating it! The pdf requires that you have adobe reader to look at the file. This program is free at the Adobe website

Hopefully this tool will be valuable to you in navigating the maze and all it’s tricky terminology

The Dictionary for Parents of Children with Disabilities

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….and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

Disability 101: The greatest gift is not help
Columnist Sandy Lahmann, former Special Education Teacher from Colorado talks about a living with disabilities and disability acceptance. She relates a story of bringing a young boy universal acceptance among his school peers.

New group in Jackson (MO) trying to help parents of students with special needs
Group formed by teachers and parents to help parents of preschoolers with special needs wade thru the maze that is special education. Goal is to meet the needs and find ways to improve and to make parents of special education students feel more a part of the district.

Special-ed teacher a special bell recipient
Special education teacher who works to teach acceptance and integrate her students more fully wins local award for her work.

Abilities United: Making Noise to Break Hollywood Stereotypes of Characters with Disabilities
Larry Sapp, founder and president of Abilities United Productions works to break barriers for disabled actors and how disabilities are portrayed in the cinema.

Students with special needs get chance to attend USC
People with intellectual disabilities will have a chance to attend the University of South Carolina under a new program being created by the State General Assembly

RVSD Teacher’s special needs efforts lauded
Canadian educator is named to the Apple Distinguished Educator (ADE) program. These educators are recognized for understanding the application of technology in educating students and are trained in advocacy, advising, authoring and providing expert assistance.

‘Retarded’ is a Dirty Word
Richmond, VA women work to have the state remove the word ‘retarded’ from the books and used the appropriate terminology of intellectually disabled.

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Katherine’s stroke was diagnosed at about 1.5 days old (ok with a good ole kick in the A** to the doctors from her father and me and a sign from God called a seizure) but none the less it made a HUGE difference in terms of where we are today. Had we listened to the doctors, we would have kept on believing all the signs we were seeing were “in-utero positioning” and that she’d be fine once she got used to being out of the confines of the womb. Uh, yea, RIGHT! The stroke robbed her of ½ a brain and me of dreams I’ve long since forgotten.

If we had stopped there it would have robbed Katherine of even more. It would have robbed her of a chance! The first doctor told us that we should just put her in an institution because she’d never walk, talk, or participate in society. For all intensive purposes he said she’d be all but vegetative. He was shown the door (and yes, it was a scene complete with very LOUD expletives!). The next Doctor was the head of Neurology at the hospital.

She was an amazing woman that got Katherine set up with therapy services – early and often. Katherine started probably when she was 3 months old, but intensively from then on. For the record, she talks (too much for her own good sometimes) walks (even though she needs a brace and has a gait) goes to school, has friends, horseback rides, plays basketball, sings songs from every musical she can get her hands on and brings a whole lot of people a whole lot of joy.

Not everyone has a child that has such significant deficits and thank God for that. It does not diminish what early intervention and the intuition of parents can mean to a child.

Is your child not progressing and reaching milestones as they should be? Can you just “feel” something isn’t right? Has your child started to avoid eye contact? Are they not speaking yet? Are they withdrawn or unemotional? Do they respond to their name? Are they not walking even at a year and a half? Trust your instincts. Talk to your pediatrician. If they don’t listen and you just know something isn’t right, ask them for a referral to your state’s early intervention program. Have your child evaluated by them. Federal law requires that all states have an early intervention program for children 0-3.

According to the US Department of Education, early intervention programs are established by Part C of the Individuals with Disabilities Education Act (IDEA) which guarantees all eligible children, regardless of their disability, access to services that will enhance their development.

The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.
Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B. State by state who to contact for early intervention can be found by clicking here.

Maybe your child is just a “late bloomer”. If by chance that gut instinct we parents have is right….it will be the best gift you ever give your child. Early intervention can mean quick resolution to numerous delays, and can mean huge differences in outcome for more significant ones. At worst you’ll get some peace of mind about the late bloomer in your life. No time like the present to make that call.

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In the final piece on estate planning I’m going to talk about the piece that honestly I’ve been dreading – probably because doing mine was such a struggle, so I don’t want anyone sitting there thinking I’m so perfect and organized.

It’s called a Letter of Intent or Life Plan. It’s purpose is two-fold. First is to provide a bunch of background information to a potential caregiver/guardian might need either because you are incapacitated (think significant injury that takes you completely out of the day to day for an extended period) or at the eventuality of your death. The second is to give this person an understanding of your hopes and desires for the future of your child. Things you’d like to see your child experience and achieve.

My attorney provided me with some great software to do this with yours may or may not. If not – THIS IS THE PLACE TO GO. It’s a ton of reading so I’ve taken the liberty to consolidating a bunch of it into a startup guide, using illustrations of what I’ve done to put together mine for Katherine to give you an idea of what to do. The Betterway Press gave me some good feedback when doing this for Katherine. I think you’ll find it useful as well.

While I did mine on the computer, you can certainly do yours in a notebook/binder.
Here are the sections you should have

• Background Information – Everybody’s name (this means yours, spouse’s, other children) Dates of birth, Social Security numbers.

• Advisors – Lawyers, Accountants, Insurance broker, investment advisors, bankers, other experts that help your child. For Katherine, this group includes her support coordinators for her waiver services as well as the support person, Sharon who makes it possible for us to keep Katherine at home. Make sure to include as much contact information for each of these individuals. I also made sure to differentiate as much between the different waiver coordinators and their roles as possible. Most people will figure out what the lawyer does;)

• Important Documents – where do you keep your estate plan (Wills, Living Wills, Healthcare Power of Attorney, Durable Power of Attorney, Special Needs Trust? Insurance policies? Bank accounts? Trust account? Safe deposit box? We have a banker that we use at our local branch who is familiar with us and the trust account and checking account blah blah – I have her name in here as well as in advisors. Where’s the key to the Safe Deposit box? I also have copies of medical insurance cards in here (front and back).

• Medical – yup this was one of the biggies – took me a lot of time – much of which is now also cross referenced with accessed to Katherine’s Medefile account. It should include:
  • A list of doctors, their locations, phone numbers (if you have a particularly useful contact in the office staff at a doctors office – list their name. If someone is taking over for your short term or long term they can leverage that to get additional help from someone familiar with your child.)
  • A list of vaccinations – you can usually get a copy of this from your pediatrician – just insert it into the file
  • Medications – a current list with dosages and times (along with special instructions on how to dispense like crush and put in applesauce); a list of medication allergies medications which may have been tried, for what, the results and side effects

• Diet – this can be as serious as gluten free diets or diabetic diets but should also include information about your child’s likes and dislikes. Katherine currently has some pretty restrictive guidelines because of her braces. The list of restrictions given to us by the orthodontist goes in here.

• Safety – for some kids this will be easy – for others really critical and intense. I’m guessing that a child with osteogenesis imperfect (sometimes known as brittle bone disease) it would be far more intense. For Katherine it includes the fact that sometimes her behaviors are self-injurious in nature and things to do to protect her as well as the fact that strangers is NOT a concept she does well. Being in public requires constant vigilance.

• Placements – where is your child in school? Do they live somewhere other than with you? Where do they work? Give as much history as possible and what your hopes are for the future. With Katherine we’ve talked about the schooling she’s received, private as well as public, the residential treatment and what we hope for her future in high school. I have current IEP information included in here as well as things I am hoping to get out of the school district; training and work and living situations for the future – some of this is with Katherine’s input.

• Hobbies and recreation – what does your child love to do? Favorite places to visit? Camps the attend? Parks to visit? Katherine has a couple of local parks she loves, loves going to the theater (one of the things she’ll actually sit still for) she loves going to the movies, you get the idea…

• Religion – what religion do you practice? Do you attend a particular church? Do you go regularly or are you what my mother would have called a submarine parishioner (surfacing for major holidays). Are there practices in service that your child has problems with or looks forward to participating in? Katherine wants to sit as close to the front as I let her and hold the hymnal – and ALWAYS goes up with the kids for the children’s sermon (even if she’s the oldest by about 7 years). It’s important to her and if she’s stopped from doing these things it can (and has) lead to problems.

• Finances – what resources are available for what. Trust accounts, savings accounts, government benefits? For Katherine I talk about the fact that she could qualify for SSI and how to go about that.

I also have another tab about Katherine’s waiver services. What it will do for her and what it won’t.  What hoops you have to go through annually to renew it, timelines, and phone numbers and emails of people who can help when some low level clerk in a position to wreak havoc inevitably loses paperwork, hits the wrong button on the keyboard or some other such thing which promises to screw up these critical services. You may need a tab for something specific to your child.

To start with get SOMETHING going. Anything is better than nothing. It’s overwhelming to try to sit down and do all of this at once (take it from me – did it and failed miserably!) I finally broke it into pieces and maybe this will help you. I got the contacts together for each section. Then I moved section by section and set an ½ hour at the end of the night for a couple of weeks and it really came together much easier.

Always keep in mind this is a work in progress. I try (note the word try) to revisit this monthly. The younger your child is the more often it’s likely to change. If you have chosen a guardian – go over this document during a quiet moment with them. Have them look it over and ask them if there is information they want included. Remember, the idea is that this is a blueprint for them to follow through with your vision and plan. Make sure it’s as helpful as it can be. Most of all don’t sweat it – broken into pieces this Letter of Intent is a piece of cake – with a cup of coffee:)

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Katherine has an amazing group of “support people” Some of these special people have also been generous to Katherine. When she was little I thought what a blessing it was. As she got older I suddenly realized what a catastrophic thing it was – it was like an atom bomb over our heads waiting to go off and destroy everything in it’s wake. I wish I had known sooner so I could save some people a whole lot of headache when I had to approach them about this in the past couple of years.

I wish as the years progressed I had trusted my gut more in terms of planning for what I could see the future was bringing. Katherine isn’t going to college. Katherine will forever need assistance with some portion ADL’s (Activities of Daily Living) She will forever need someone to be checking on her and overseeing her. She will likely always need some assistance to function in society and I don’t want her winding up in some nursing home – warehoused.

I needed to immediately start to think in terms of planning for her after I’m gone. Quite frankly it was far more urgent than that – I needed to plan in terms of the here and now. Caring for her had become increasingly difficult….dare I say almost impossible. We needed help, governmental assistance type help. Well I knew eventually she would need this type of help (SSI or similar) I thought we were still several years away from looking at that. Yup, I was wrong. So I don’t get further off track than I currently am with this post let me assure you we’ll do reviews of all these types of assistance programs as we go on. We needed these assistance programs to maintain Katherine NOW and we were going have to fast track the plan to get her protected from all these wonderfully generous people. Doesn’t that sound awful?! And that’s how we landed at needing a Special Needs (or frequently referred to as Supplemental Needs Trust).

To start a trust is a legal document in which an individual or group (typically called the trustor or grantor) gives assets (property, money, etc) to be managed by another person or organization (typically called the trustee) for the benefit of a third person (typically called the beneficiary). Trusts are created for any number of reasons – asset protection, pension plans, charities, age contingencies, tax planning, and as well discuss in this article – special needs trusts.

Special Needs Trusts or Supplemental Needs Trusts (SNT’s) are for persons with a severe and chronic or persistent disability. While they have been in use for years, the US Government officially recognized them in 1993. Since assets in a trust are not considered the property of the beneficiary (the person with special needs) of the trust, it protects the beneficiary’s ability to qualify for government assistance (SSI, Medicaid, vocational rehab, housing assistance, or any other assistance based on financial need) based on assets. Most of these programs states that the person must have less than $2,000 in personal assets.

Because there are such significant restrictions regarding SNT’s you should make sure to consider the following:

• This is NOT a DIY project you get off Court TV. There are plenty of places online offering you forms to fill out. This is not a place for cost cutting measures. The money spent setting this trust up appropriately will protect your child as the years go on. Not setting it up properly is an incredibly risky proposition. You can find places that will tell you you can do it yourself. I will just tell you most of them have a do it yourself kit to sell. PLEASE PLEASE do not be what my mother would have called penny wise, pound foolish.
• All doctors are not created equal – and just as this statement is true, not just any attorney should be drafting a supplemental needs trust. Just like doctors who have specialties, there are attorney’s who specialize in this area of law and you can find them for your area at Special Needs Planners or Special Needs Alliance.
• To revoke or not to revoke that is the question. Actually it’s not that easy of a question. Revokable trusts can be taken apart, funds removed for reasons other than support of the beneficiary. Irrevocable trusts cannot – this is a WAY over simplification of this issue but know it exists. Federal guidelines have very specific rules regarding this – consult with a knowledgeable attorney
• Buy one Get one Free – nope sorry it’s not a canned goods sale at your local supermarket. If you have two family members who are disabled and need trusts, you will need to set up two trusts – the federal requirement is that the document detail what constitutes supplemental care for the beneficiary and no two people will be alike in their needs – not even identical twins.
• Yours, mine, theirs – where the funds come from DOES make a difference. Funds that belong to the individual destined to be come the beneficiary of the trust are different than funds from a parent/grandparent setting up a trust for the beneficiary. As such they are different types of trusts and may make a difference in terms of access to benefits. This would be a whole law lesson – if it applies to your scenario though you should be certain to consult with an attorney specializing in special needs law.
• Well I’ll just leave the money to someone else – Yea this is sometimes called disinheritance. You just cut your disabled child out of the will leaving the money you would use to support your special needs child to a sibling or other trusted individual who will use that money to help your child. Even if we assume this person will be completely honest and trustworthy in the fiduciary responsibility you’ve entrusted them in, it doesn’t protect those funds – you’ve left them to the individual – that individual gets sued, divorced or some other reasonably possibility this money doesn’t belong to your child – it belongs to that sibling or friend who can now be wiped out by the lawsuit or lose half of it in the divorce on and on…..it’s just NOT a good solution.

Who to Trust

Every trust has a trustee – someone who makes decisions about what the trust will and will not pay for. They have guidelines about what to use the money (both by the federal government and the people who set up the trust) for and follow them. There are basically two choices people use to name as a trustee, family member or bank. My personal preference was for an individual – they will know Katherine and better assess her needs than some sterile institution. Please note I have named 3 different trustees – each to cover in the absence or inability of the previous one. I suggest you have at least one person to back up your first choice. If all else fails and everyone is gone – I have a bank as the back up. Not sure about all states but in the state where I live there is also something called a Trust Protector whose purpose is to assist if needed in protecting the interests of the beneficiary and in achieving the objectives of the trust as outlined in the trust and usually in the Letter of Intent (another article) The trust protector is basically a safeguard position on the unlikely event that the trust is not being utilized properly by the trustee.

Money Trees

Obviously money doesn’t grow on trees and when you’re already supporting a special needs child it can be even more difficult to budget another line item. Because of this you can fund the trust at the time of death with the items you leave behind – the sale of a house and other assets. Some people use life insurance policies instead of or in addition to. Some people use a second to die policy which is a less expensive form of life insurance because it doesn’t pay until both individuals (usually a husband and wife) are deceased. There are a number of creative ways to fund it and your attorney can give you some ideas and probably connect you with someone who specializes in financial planning for a child with special needs (MetLife runs one such program)

A Dip in the Pool

There is another type of trust called a Pooled SNT. This is usually run by a not for profit and it is where numerous individuals who are disabled pool their resources into a trust. Before you panic thinking someone else is benefitting from your dollars it’s not quite like that. The Pooled trust has sub-accounts so that each individual has access to their own funds but by pooling the funds has greater investing potential. There are numerous things that need to be considered before entering into a pooled trust One considerations is that in many pooled trusts at the death of the beneficiary the remainder of funds either go toward repaying medicaid or into the general fund of the trust. You can not pass down the money placed into a pooled trust. According to Mark Albertson of the Albertson Law Group there are several questions individuals should ask before joining a pooled trust.

• How long does it take to make a distribution? Some trusts can take weeks from the time a request is made until the distribution is actually made. A well run Pooled Special Needs Trust should take no more than a week from time of request to time of distribution.
• How are the funds invested? The risk tolerance (ability to withstand financial loss with investments) of most benefits recipient is very low. Care needs to be made that the funds are not placed in risky investments.
• Is the trust solid as a business entity? Oddly enough, choosing a Pooled Special Needs Trust that has the lowest fee can be a mistake. The trust that has little or no cost is probably run by volunteers and may not be responsive, the most knowledgeable investors, or viable for the long term.
• What is the policy regarding retained assets in the trust? Many Pooled Special Needs Trusts require that some or all of the assets remaining in the trust upon the death of the beneficiary be retained by the non-profit that oversees the trust and is either redistributed to other recipients or pay for the general operating costs of the non-profit. Some do allow whatever may be remaining to be distributed to heirs the beneficiary selects. Keep in mind; the State Medicaid Agency will have a lien on the assets upon the death of the beneficiary that in many cases will be greater than the account.

Because there are numerous possible reasons for using any number of trusts (I haven’t even covered self-settled or third party trusts) I can not emphasize enough the need to use an attorney, and more specifically one which concentrates his or her practice on this specific area of law. Your child is a special individual and so their trust should be specialized to their needs and best interests.

(This is the fourth in a series of articles that The Special Parent is doing on legal documents you should make sure you have to protect your special needs child. The information contained within this series is for general informational purposes only and is strictly the opinion of the author who is not a legal practitioner. It is not intended in any way to provide or offer legal advice. To obtain legal advice, please consult with your attorney or a qualified legal representative.)

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From Merriam Webster Online

Durable

Main Entry: du·ra·ble

Function: adjective

able to exist for a long time without significant deterioration; also : designed to be durable <durable goods>

In the previous article on Advanced Directives I made reference to putting Katherine into guardianship as she reaches the age of 18. While that is certainly one option that I may have to avail myself of, in most states another option available for me to consider would be a Durable Power of Attorney

First off there are many types of Power of Attorney (POA). All of these legal documents branch off from the premise that one person is granting another person (frequently referred to as their agent or attorney-in-fact) to act on their behalf in a legally binding capacity. The two major types are

• Limited POA – grants either specific powers (power to close a specific real estate deal) or broader powers in a limited period of time (to act on a persons behalf during their travel out of state/country for a period of two weeks)
• Durable POA – grants powers (typically broad and financial in nature) for a person to act on your behalf. The difference is with a durable POA the document continues in effect even if the person granting the powers initially becomes incapacitated.

Obviously as with any legal document there are 100’s of shades of gray from here but this will give you a good foundation to move forward on.

Pretty much anyone who has property (house, car, etc) or income can benefit from having this document as a part of their estate plan. Typically an estate plan would be set up with a Durable Power of Attorney. You put a Durable POA in an estate plan to protect and provide for your loved ones financially and legally in the event you should ever become incapacitated due to illness or injury. With this in place, any number of issues can be addressed by your agent on your behalf. For my Durable POA (and I’m sure for many if not most married couples) my husband has been named as my POA. This document gives him the ability to take care of any number of transactions however the one that gives me the most comfort on a daily basis is the provision “To Provide Support for Dependents”.

My husband is not Katherine’s biological father. Because of this, legally he can not make medical, educational, or legal decisions on her behalf….until this little document got signed. This document protects Katherine if I go out of state for any reason (which I have done from time to time). He can get her either maintenance or emergent medical care, he can deal with a situation at the school should it arise. It also allows him to do things on her behalf should something more ominous happen and I was unable to attend to her needs. For my both my children it means that basically whatever my husband needs to do to keep the day to day things going like paying the mortgage, hire help to care for the children, paying for my medical needs (after an injury or illness), filing insurance claims, applying for government benefits, by selling stocks, securities, real property the list goes on and on he has the power to do so – all because of this one document.

Alternative to Guardianship

As I talked about briefly in the first paragraph, a Durable Power of Attorney may be a viable alternative to guardianship. The Academy of Special Needs Planners writes:

Parents of children with special needs must be concerned with ensuring that medical and financial decisions will continue to be made in the child’s best interest once the child reaches age 18 – the age of legal capacity. In most states, once a child reaches age 18, he is presumed to have decision-making capacity and the parents’ legal authority ends. Parents of children with special needs have various options, each with advantages and disadvantages depending on the situation, to establish a new legal authority to continue making important decisions for the child.

There are ways to avoid the time and expense of a guardianship or conservatorship process while accomplishing the same basic goals. If the person with special needs has sufficient capacity to understand, he can appoint an agent using a durable power of attorney over medical or financial matters, or both. Depending on the type of power of attorney, the agent will have the authority to make financial and property decisions or medical and personal decisions on behalf of the adult child, all without court intervention or direct oversight.

If the adult child receives either Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) and cannot manage the income, the Social Security Administration allows another person to receive the funds to use on the child’s behalf. However this option also requires the filing of an annual report showing how the money was used.

In reading the way it is described here it is unlikely that a Power of Attorney will actually work for Katherine specifically but there are many for whom this would be a far more preferable way of handling these matters. It would maximize the independence of an adult child who was higher functioning but needed assistance and/or backup. I know that one of my major concerns about which way to proceed (Durable POA vs. Guardianship) is protecting as much of Katherine’s independence and dignity in the process.

The Durable Power of Attorney might be an excellent option also for a family with an adult child with mental illness. At times of instability and crisis, the POA would not negate their ability to assist the child with financial and other issues because the nature of a Durable Power of Attorney is meant to continue regardless of incapacity – mental or physical. Certainly during periods where an adult child is stable and medication compliant there might be no need for the powers contained within but for instance during a manic phase of someone with bipolar disorder the Agent for the POA could potentially use those powers to protect assets from being spent off in an out of control shopping spree.

As you can see used appropriately the Durable Power of Attorney can be an incredibly valuable tool. You no doubt can also see the possibility for problems which is why as with any document of this nature which places a high degree of trust in the hands of another you should be thoughtful with your choice of designee.

Can you see how it could benefit you and your child? Have you had occasion to use a Power of Attorney rather than seeking Guardianship or Conservatorship? Tell us about it!

(This is the third in a series of articles that The Special Parent is doing on legal documents you should make sure you have to protect your special needs child. The information contained within this series is for general informational purposes only and is strictly the opinion of the author who is not a legal practitioner. It is not intended in any way to provide or offer legal advice. To obtain legal advice, please consult with your attorney or a qualified legal representative.)

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