Here are some of the benefits to having co-guardians:

• Someone is available if a guardian needs or wants to travel or take a break,
• There is less of a likelihood of needing court proceedings if one of the guardians passes away,
• Sometimes a parent and other adult child will serve as co-guardians of a family member so that when the parent passes away the adult child can continue to serve (and will already be familiar with the role of guardian),
• Having shared decision making power can help relieve the burden of serving as guardian.

Some things to keep in mind are that the guardians will need to agree on major decisions such as medical care, housing and work.  This may not always work in all families so take some time to consider whether co-guardians will work in your case before taking on that responsibility.

As Pamela writes,

the workbook helps parents provide information about their special needs child to future caregivers and trustees. By using the charts and answering the questions in this workbook, parents will know that when they are no longer here to take care of their child, those entrusted with that responsibility will know enough about their child’s unique personality and lifestyle to make informed, consistent decisions for that child. And the parents will also know that their own loving choices and the values important to them will continue to be used in making life decisions for their child.

You can order this booklet by clicking here, and the book is available in print or electronic form.

You know the importance of having a letter of intent for your child with special needs, but maybe you've been putting it off, maybe you didn't know where to start, maybe you thought it would take too long, or be emotionally difficult or any number of other "good reasons" you had for putting it off.

Well, here's your chance to get started.  Set a kitchen timer for 50 minutes (or 2 sessions of 25 minutes) to start the letter.  Clear some space on the table, and write. It doesn't have to be perfect the first time out, and you can keep a running list of questions and issues that need follow up, but imagine how good it will feel to have it started.  The link above will bring you to some examples if you need help getting started. 

When you are ready to take the next step of meeting with an attorney to more
fully plan for your future and the future of your child with special needs to make sure that any funds you leave to them will enhance their quality of life while not jeopardizing the essential services they receive,  call me at 781-749-2284. 

I was reminded of this story today while I was reordering Five Wishes Living Wills for my clients, and saw that the company now offers a version of this document for children, called My Wishes. 

Much like the adult version, this booklet walks the child through their wishes for how they want to be treated, how comfortable they want to be, what they want their friends and family to know, what they want their doctors and nurses to know, what their likes and dislikes are and what things will make them feel better.  What a great way for a child in the hospital or facing an illness or chronic condition to feel like they have some control over what is happening to them. 

I offer the Five Wishes Living Will to my adult clients, and will now be offering the My Wishes children's version for those clients who want them for their children. 

You can download a sample of the My Wishes booklet here: Download Five_Wishes_MyWishes_Final, and place an order here. 

However, these young men and women may still need and want their parents or other relative to be involved in their care, to help them with their banking, to be able to get information from their doctors in the event of a hospitalization, or to be able to call the insurance company to check on a claim.   In order for someone to assist the child after they turn 18, the child will need to sign legal documents giving another person permission to obtain information or take action on their behalf. 

A signed health care proxy will allow the appointed parent or relative to make health care decisions if the child is deemed unable to make those decisions for themselves.  The signed HIPAA release will allow the appointed person to obtain medical information on the child's behalf and talk to health insurance companies about claims and other issues.  And a signed durable power of attorney will allow the parent to assist the child with their property and finances. 

If you are thinking about bringing your over-18 child to an attorney to talk about these documents, keep in mind that the attorney will need to speak to your adult child privately to find out what their wishes are, and that the adult child is the client, not you.  This is true even if you are paying the bill.  The child can give their permission for some information to be shared with you and can request that you be in the room for most of the meeting, but they will also have the right to tell the attorney things that are kept confidential.  

You should not use your own personal estate planning attorney to have these documents drafted for your child.  This is because if your child were to ever need a guardianship or conservatorship, your own attorney has now become your child's attorney as well and would not be able to assist you in pursuing a guardianship over your child. 

There are indeed many cases where a child with special needs does need a guardianship or conservatorship, but there are just as many or more cases where having legal documents in place to allow the adult child to have assistance with their health and financial matters while retaining their legal rights is the most appropriate course of action. 

I will be speaking on this issue in September at the Transitional Age Youth Group of the Parent Information Network, which is a is a parent information
support and advocacy program designed by parents and professionals
to help families that are challenged by children’s mental health,
emotional, or behavioral needs.

________
Estate
Planning, Probate and Trusts involve complex areas of law. Individual
circumstances must be considered before any advice can be given.  The
general information above is not to be construed as legal advice, which
can only be given after consideration of the unique facts of each
matter. Please seek the advice or counsel of your attorney, financial
advisor or CPA as it may be appropriate.

• an outline of your child's day,
• their likes, dislikes, fears and what calms them,
• who attends to their bathing and grooming (can they do it themselves or do they need assistance)
• can they handle money? tell time? read?
• the type of clothing they prefer (fabrics, tags/tagless)
• the type of food they like and don't like,
• their hobbies and activities,
• their relatives and friends, 
• any assistive devices they use,
• places they like to visit,
• what holidays they celebrate and how, 
• their asset and income and the information about any Special Needs Trusts you have set up for them,
• any wishes that you have for them.

Obviously, the information will change as the child grows, so it is vital revisit the letter every 6 months or so. And if you've given copies of the letter to anyone, make sure you provide them with updated copies. 

To see some examples of letters of intent, visit Patti Dudek's blog where she has some samples posted: click here.

Sarah Palin's son Trig helps spark a national conversation

Sarah Palin's 5-month-old son, Trig, who has Down
syndrome, has sparked a national conversation about kids with special
needs: the extra care they require, available government benefits and the pros and cons of prenatal testing.

One topic that has gotten less attention is the financial stress
that parents often face. Many kids with special needs require financial
support throughout their lives, and while government assistance often
covers basic medical care, holding assets over $2,000 can make them
ineligible. That means advance financial planning, through wills,
estate planning, and trusts, can be essential to ensuring kids with
special needs have the support they require once they grow up.

"If [parents] fail to deal with these issues now, it will jeopardize
their child's quality of life down the road," says Tanya Harvey, an
attorney who focuses on special-needs planning in the Washington, D.C.,
law office of Bryan Cave.

Here are tips from leading experts in the field of financial planning for kids with special needs on how to get started:

1) Establish legal guardianship.
After a child reaches the age of 18, he is considered an adult. But
some kids may still need a guardian, says Harvey. One of her tests
includes asking whether a child would impulsively buy a pretty diamond
in a store window. If the child shouldn't be held responsible for such
a purchase, then he needs to have a legal guardian, or else the
contract would be binding.

Karen Greenberg, director of Prosperity Life Planning, a nonprofit
that teaches financial planning to families of children with special
needs, along with her husband and associate director, Jaret Vogel, are
urging Congress to adopt a special-needs tax credit that
would help parents pay for the cost of establishing such a
guardianship. Their proposal would provide up to $5,000 in tax credits
to offset the cost of legal fees.

Families often can't afford to set up a guardianship, which involves
court expenses and doctors' fees, so they don't do it, say Greenberg
and Vogel.

2) Describe your child in writing. Greenberg recommends writing down a "minibiography" of
children that could be given to any future guardians or caretakers. It
should include medical information like allergies but also personal
preferences, goals, and details about friends.

3) Protect your child's eligibility for public benefits.
Medical care can be so expensive that even relatively wealthy families
may need to rely on Medicaid and Social Security income. Because having
more than $2,000 in assets threatens that eligibility, "you want to
make sure that if your child is going to receive any money, that it's
in a special-needs trust so it doesn't disqualify them," says Harvey. A
lawyer or financial professional can help establish a special-needs
trust, which doesn't count against the $2,000 limit. Money left to the
child through a will should be directed into this trust.

Parents often choose to set up a trust that goes into effect when
they die, says Harvey, to allow them flexibility to spend that money in
different ways in the meantime. But families may be better off setting
up the trust immediately if a grandparent wants to leave money to the
child, for example.

Greenberg adds that another benefit to establishing a trust is that
the money is then considered separate from the parents' assets, which
protects it from creditors and divorce settlements.

4) Consider insurance policies.
Life insurance that pays out upon the death of the second parent—often
called "last to die" policies—can help parents ensure their child has
enough money after they both die without straining their budgets too
much beforehand.

When Greenberg, who has an autistic son, examined her budget several
years ago, she decided to purchase such a policy. It pays out $650,000
on the death of Greenberg or her former husband, whichever comes
second, for about $2,000 a year. In addition, for years, she tucked
away about $400 a month into a special-needs trust, which now holds
around $55,000. That means that if both she and her former husband were
to die, their son would have the $650,000 life insurance payout and the
$55,000 trust. Together, she calculates, that will generate an income
of around $35,000 a year—enough to pay the bulk of his expenses.

5) Avoid common family-related mistakes.
"A lot of parents say, 'How about if I give money to a relative?'" says
Harvey. But doing so is a mistake, she says, because not only is the
relative not legally bound to spend that money on your child but a
creditor or divorce settlement could take it.

Greenberg recalls looking into her options for her son in the 1980s,
when the common wisdom held that parents should leave money to their
other children, who would then be expected to care for their sibling
with special needs. But Greenberg doesn't like the idea of burdening
siblings, who have often already experienced so much stress.

Family members and friends planning to leave money to a child with
special needs should also be encouraged to do so through a
special-needs trust instead of leaving money directly to the child,
which could interfere with benefits eligibility. Grandparents may even
want to have their wills looked over by an attorney to make sure any
gifts don't threaten that eligibility.

Source: US News & World Report.

Residents interested in the program should contact Offier Sean Cavanaugh at 781-749-1212 to set up an interview and to find out if their loved one qualifies for the program.

Source: Hingham Journal.

The film features the prominent use of the R-word and portrays people with intellectual disabilities in a disparaging way. 

Beginning on Wednesday, August 13, 2008 and continuing through Sunday, August 17, 2008 The Arc's goal is to mobilize their grassroots network of advocates to contact the local newspapers, as well as DreamWorks, protesting the movie's content.

For more information on ways you can get involved, visit the Arc website by clicking here.

Even an adult child who is having problems with gambling, alcohol or drugs should probably not receive large inheritances outright, and should certainly not be named as your Power of Attorney (the person who would be managing your property in the event of your disability.)  If an adult child is named, and there has been a severe change in their circumstances, you should review your estate plan.

While it can be distressing to admit, you must let your attorney know about these issues when you are planning your Wills, naming beneficiaries on insurance policies or retirement accounts, and when choosing agents to serve under the various documents.  Your attorney can let you know about the various strategies that exist to make sure that your child is protected in the event of your death – both from the danger of having access to no money, and the danger of having too much.

(For information on the support systems available in Massachusetts for parents of addicts, visit  http://learn2cope.org/ .)