About two weeks ago at DifferentDream.com, guest blogger Kathy Guzzo posted an important article based on her experience as a paralegal and the parents of an adult child with a chronic medical condition. In it, she explained how important it is for parents of adult children with special needs to have a medical power of attorney in place. Today, she’s back to talk about the importance of another legal document, the power of attorney for property.

Power of Attorney for Property

In my last post I explained the benefits of having a signed power of attorney for healthcare as well as a signed medical authorization. I would now like to share the purposes of a power of attorney for property and why it’s important to have for any child that reaches 18, but even more so for a child with a chronic illness. As I explained previously, having been a legal assistant for years, I knew both power of attorneys were important, but when our 18-year-old daughter was diagnosed with Systemic Lupus and Epstein Barr Replication, I became even more aware of their importance.

The Purpose for a Power of Attorney for Property

A power of attorney for property gives the designated agent the ability to handle any type of business for the principal listed, in our case our daughter. When anyone fills out and signs forms for any purpose such as to open a bank account, register for classes at college, finance a large purchase, get a cell phone account or other utility bills they are the only person that has access to any information on those accounts.  The document holders, i.e. bank, college, utility company, have a legal obligation not to give out any personal information regarding the business relationship between them and the person who signed.

When to use a Power of Attorney for Property

I have to admit I have not used the power of attorney for property as much as the one for healthcare but it’s great to have on hand for the following purposes.

• To contact any company other than healthcare providers to discuss a bill.
• To withdraw money or check balances in a bank account unless the parent is on the account. We purposely had Andrea get her own account without our names as a sign of our trust in her ability and her need to be responsible and there were times I needed to withdraw funds.  Of course with online banking if you have your child’s passwords you can check the balance.
• To have a cell phone temporarily turned off without being charged a fee.
• To close any type of account.
• To discuss a lease or any other issue with a landlord.
• To discuss information with instructors, financial office or any administrator at college child is attending. There were a few times I had to contact instructors because Andrea was ill as well as discussing special needs she had with the administration when they required signed permission from her.

As with the power of attorney for healthcare, there may be times when someone may hesitate to give out information or want a verbal consent, but legally all they need is a power of attorney.

Respecting the Power of Attorney

Another important thing to remember with regard to using either power of attorney is that once signed, they can be executed at any time. The principal on the form doesn’t have to be unable to act on his or her own behalf. By signing the document they give their chosen agent permission to access their information at any time. For this reason, a parent needs to be very careful not to abuse the privilege their child has given them, by accessing information or contacting people when it really isn’t necessary.

Final Thoughts

Some attorneys combine the power of attorney for healthcare and the power of attorney for property as one document.  This document will be called simply Power of Attorney or possibly Living Will. There are pros and cons to this, one being that a person may want to designate different people for each of the separate documents. So be sure you discuss things prior to your appointment and be prepared with any questions you may have for the attorney. As I mentioned before, having an attorney prepare powers of attorneys should be relatively inexpensive, but regardless of the cost it’s worth it because of the problems and stressors it can eliminate.

Have You Had a Similar Experience?

If you’ve dealt with these legal issues or similar ones, Kathy and I would love to hear from you. Share your best advice, your questions, your concerns, whatever is on your mind. And thanks to Kathy for sharing both her experience and expertise again today.

Jolene

Okay, raise your hand if you’re are parents of kids with special needs under the age of 18?
Now, raise your hand if you hope to one day be parents of kids with special needs over the age of 18?

Uh-huh, that’s what I thought. Almost all of you raised your hands both times. Which means today’s post by guest blogger Kathy Guzzo is a crucial read for all of you. Even if your child is a babe in arms now, one day you’ll be glad you know what to do to guide your child with special needs into adulthood.

The Importance of Powers of Attorneys and Medical Authorizations

Just weeks before entering her freshman year of college our daughter was diagnosed with Systemic Lupus and a few months later Epstein Barr Replication. Both caused severe complications in the years to come. Having worked in an attorney’s office for years, I knew the importance of powers of attorney for property and healthcare (also known as Living Wills), for myself, but it was through trial and error I learned how imperative it was to have them for my children as soon as they turned 18 years of age, especially when dealing with medical conditions.

Why is a Power of Attorney Needed?

The purpose of a power of attorney for healthcare is to allow the designated party access to information regarding the person’s personal health information from diagnosis of an illness to clarifying billing information and even contacting the health insurance company. According to The Health Insurance Portability and Accountability Act (HIPAA) regulations, as soon as a child turns 18 it is unlawful for any medical provider to release information on that child to anyone other than the patient, unless a power of attorney is on file.  I should note that some providers might require their own medical authorization signed by the patient even if there is a valid power of attorney. This isn’t necessary, but for many offices it’s policy. Our daughter solved the question of what document to use when, by taking a copy of her power of attorney to her first appointment with a doctor and then asks at that time to sign a medical authorization.

When to Use A Power of Attorney

There’s been many times in our daughter’s lengthy illness that I have needed access to medical information, thus having to utilize the power of attorney such as:

• To schedule and/or verify any type of medical appointment.
• To obtain an update on medications.
• To discuss with nurse and/or doctors comments, instructions, test ordered, etc.  made by a doctor during a recent visit, especially when I was unable to attend because of scheduling and/or logistics. There were times Andrea was overwhelmed by information she was given and with her college schedule she was extremely busy so it was helpful to both of us that I could call for explanations.
• To ask about a new symptom or possible reaction to medication.
• To obtain information via telephone when she was hospitalized.
• To obtain copies of any records and test results.
• To be able to discuss a charge or balance of a medical bill with the billing department because even though Andrea was still on our insurance, when she turned 18 the bills were in her name so the provider wouldn’t discuss it with me without a power of attorney or a signed medical authorization from their billing department.
• To be able to discuss Explanation of Benefits (EOB) with a customer service representative. It’s highly beneficial to understand the insurance policy’s benefits, copays, network, etc. when making these calls.

There may still be times when the office representative won’t be cooperative or understand the reason a parent is calling for an adult child. In fact, I once had an employee in a billing department actually say, “It must be nice for your 23 year old daughter to have you handle her bills”. My first reaction was to tell her she had no idea all that Andrea deals with on a daily basis, but instead I ignored the comment and got back to the issue at hand. I had the necessary documents and she was obligated to give me the information requested.

Powers of Attorney Are Priceless

For a young adult trying to figure out life and all the responsibilities that go along with it is tough. But for a young adult with a chronic illness everyday life can be overwhelming because of all that’s involved in managing their illness while not feeling well. That’s why I was glad Andrea had signed the necessary documents not only for an emergency health situation, but so I could help alleviate some of the stress caused by medical bills and constantly dealing with health insurance approvals, denials, wrong coverage, etc. Having powers of attorney prepared by an attorney is relatively inexpensive, yet the value they are to the parents of a chronically ill adult child is, as they say, “priceless.”

What Do You Know about the Subject?

Whoa, do you need some time to absorb everything Kathy had to say? Do you have questions you want to ask? Similar experiences to share? In any case, leave a comment to join this important discussion.

Hunting for my legal pad,
Jolene

Yesterday, guest blogger Kathy Guzzo shared her initial reaction when her daughter Andrea announced she was planning to run in the Chicago Marathon. Today, Kathy explains how she came to accept her daughter’s decision and what she learned as her daughter trained for the big event.

From Worry to Pride: A Mother’s Marathon, Part 2

When our children were young we would tell them that could do anything they wanted to, that even though they may not be the best at something, the important things was that they do their best.  Andrea’s taking those words to heart and is willing to give her all to try something extraordinary and I really am proud of her. I’ve never met anyone that knows their body, its capabilities, as well as its limitations as well as she does. She told me she when we first discussed the race that she had gotten her doctor’s okay and was being monitored by him as she trained.  She’s always been determined and focused, which I’ve said before is what at times has kept her alive, which gave me confidence in her decision to run.

Trust is a Part of the Training

In the months since when others learn that she’s training for this marathon, they all get the same look of astonishment of their face that says, “Is she crazy or what?”  Then they’ll ask me what I think of it, and I can say to them that although I have my concerns as any mother would even if their children were healthy and they undertook a marathon, I’m okay with it because it’s something she wants to do, and I trust her to know her limits.

The Training Is Worth It

I realize now as the days draw very near to the race, that getting to this point in my life where I can let her do what she needs to do in life, without becoming extremely worried, has been a marathon for me.  Each day of the ten years of her illness has been a day of training. As she’s become an adult with a chronic illness, I’ve had to be committed to let her live her life, dedicated to support her in her decisions and focused on being her biggest supporter. So on October 9, 2011, when thousands are running that race in Chicago, I will be on the sidelines, not waiting to see her collapse, but anticipating the exhilarating feeling she’s going to experience. Regardless of the outcome of the race we’ve both won just by being there, she the runner and me on the sidelines cheering my heart out with pride.

So How Did It Go?

After the marathon, I emailed Kathy to see how Andrea did in the marathon. Here’s her response:

Andrea decided last Monday not to run. My 90-year-old mother-in-law was recently diagnosed with lung cancer. Andrea only has a certain number of vacation days  so she said she wanted to save them in order to come home to see her grandma. I’m sure you can understand that as the mom I had mixed feelings on this. I felt bad because she’d trained so hard and  really wanted to run. (She recently told me a marathon was on her ‘bucket list.’) But on the other hand I was relieved that she wouldn’t be running. I don’t believe God allowed my mother-in-law to get lung cancer to stop Andrea from running, but I do believe that He used this once again to show me that He is in control. I could’ve spent the last 6 months worrying and telling Andrea I didn’t think running was a good idea, but instead my support of her actually gave me peace. That’s definitely God.

After reading Kathy’s update, my admiration for Andrea grew. She chose time with her grandmother over crossing something off her bucket list. Race or no race, she’s a champion in my book.

Way to go, Andrea,
Jolene

Guest blogger Kathy Guzzo is back. Today and tomorrow, she writes about worry, an emotion common to parents of kids with special needs. As always, her perspective as the parent of an adult child with medical special needs gives those raising young children hope.

From Worry to Pride: A Mother’s Marathon, Part 1

Have you ever considered running a marathon or do you know anyone that has ever run a marathon? Prior to this year I would’ve answered ‘no’ to both those questions. Although two of my daughters ran track and cross-country in high school, they didn’t get the desire from me. I always said the only time I would run is if someone or something was chasing me.

The Requirements and Improbability of Running a Marathon

Running a marathon takes immense dedication, training and stamina. Most healthy adults are unable to accomplish this feat even if they try. That’s why when our 27-year-old daughter, who has suffered with many complications of lupus and Epstein Barr Replication, signed up to run this year’s Chicago Marathon on October 9, 2011, my first thought was, “What is she thinking?”   After all, for the past 10 years she has needed extra rest, fainted several times without really exerting herself and dehydrates extremely quickly.

Thinking Through The Situation

Luckily I wasn’t talking with her when I found out, so I had time to rethink my reaction and try to look at this major endeavor from her point of view. She was very athletic prior to her illness. Her degree is as an athletic trainer, and she’s been training college and even a few professional athletes for 4 years. So she is well aware of all that’s required to be able to run a marathon.  I also realize all she’s given up in her life, both small and large, because of her illness.  Yet, it was when I thought about all those that would tell her she was crazy to try, that it may possibly exacerbate her illness to a critical stage requiring months to recuperate, that I decided to be her biggest supporter just as I did all our children when they made a decision to do something.

Share Your Reaction

I think Kathy’s daughter takes after her mother. They’re both incredibly brave women. What’s your reaction to her daughter’s goal and Kathy’s response? Could you let go of your child like Kathy did? Leave a comment to share your thoughts. And come back tomorrow for Part 2 of Kathy’s story.

Jolene

Financial planning is an important topic for parents of kids with special needs. A July 2011 post, referred you to an excellent article about creating special needs trusts for children who may not be able to live independently or work to meet their own needs as adults.

Smart Money Advice

Recently another article at www.smartmoney.com with some good advice came my way. Blogger Kelly Greene suggested three ways for parents to plan for the future:

1. Pool Resources
2. Create a Special Needs Trust
3. Craft Your Will Carefully

Wall Street Journal Advice

The article also has a link to a Wall Street Journal column that explores other options for parents. Between the two pieces, you’ll learn nuggets new to me, despite my research for the financial planning chapter in Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs.

This Blogger’s Advice

My advice to you is this. Click your way to the Smart Money site and then on to the Wall Street Journal to learn all you can. Chances are your child will outlive you. But through smart financial planning, you can give your adult child a gift to last a lifetime!

Your Advice

If you have personal experience or professional advice about financial planning, please leave a comment. The more advice, the merrier!

Jolene

Yesterday, guest blogger Kathy Guzzo explained how she and her adult daughter with special needs developed a list of boundaries concerning her medical needs. In today’s post, Kathy shares how she and her husband showed their daughter how the boundaries listed in the first part of this series would help them both accept the responsibilities associated with her medical care.

Setting Boundaries, Part 2

Andrea was always strong willed and determined, which has helped her survive many complications during her illness, yet when it came to relinquishing some of the independence that she had gained during her first six months of college life there was a slight tug of war.

Both Sides Accepting Responsibilities is Important

We reminded her that being independent didn’t mean she couldn’t ask for help at times.  We were a family and would always be dependent on one another and that was okay.  We were also very straight forward in stating that we had willingly taken on the responsibility of helping her with college expenses and paying her medical costs, so in return and out of respect for us, her responsibility was to inform us of her health issues as they occurred.

Seeing Positive Results

In the end she realized that it wasn’t that we didn’t trust her, or think that she wasn’t capable of taking care of herself. We set the boundaries out of love, concern, practicality, and to help us sleep at night.  So when calls like the one mentioned above occurred, sometimes in the middle of the night, as I waited for the next call to get an update I’d pray for her health, but I also thanked God for each portion of wisdom He gave helping us all navigate her unique road to adulthood.

What Have You Learned?

Kathy, her husband, and daughter had a crash course in setting workable boundaries when Andrea went away to college shortly after being diagnosed with lupus. Your experiences with an adult child with special needs may be different than the Guzzos, but they probably taught you a great deal. If you would like to share lessons learned during your crash course as the parents of an adult child with special needs, please leave a comment.

Thanks once again for sharing your wisdom,
Jolene

This month, guest blogger Kathy Guzzo talks about boundaries. Boundaries with adult children who have special medical needs. In her two part series she first addresses the importance of setting specific boundaries. In Part 2, which runs tomorrow, she addresses accepting responsibilities and looking for positive results.

Setting Boundaries

“Mom, should I go to the Emergency Room or the walk-in clinic?”

This was a question that my daughter posed to me one morning while she was away at college and not feeling well.  Believe it or not, I was actually glad to receive this phone call. Not because she was ill, but because it meant we were making progress with regard to finding the right balance in navigating our journey with her chronic illness.

Learning to Be Specific

The above mentioned phone call came late in the second semester of Andrea’s first year of college. We had been trying to find a balance between when she should call us and when she could handle things on her own. The first semester I tried to back off and not be a helicopter mom, hovering over her, by allowing her to make decisions. However, I realized when I began receiving medical bills in the mail for appointments and tests that we were unaware she was having that there needed to be a discussion on this topic so we could set some rules concerning her health care.

 Here’s the list of boundaries we developed for this area:

•  We needed names and phone numbers of all treating doctors. At one point she had 9 different specialists so this was very important.
• She needed to let us know of any and all doctor’s appointments scheduled. This was especially important to us because her specialists were two hours from her college so we wanted to know when she was on the road.
• We were to be kept up to date on all medications she was taking.  We felt this was important in case of adverse reactions, if she was ill while at home and we had to inform doctors of her meds, etc. In fact, there was a time she had a serious psychological reaction to a drug causing a trip to the hospital and because I knew she had just started a new medication the doctors were able to determine that the cause of her condition was medical and not psychological.
• She was to notify us of any emergency visit to a hospital or walk-in clinic. At times we were notified after her arrival, which was fine, especially if a friend took her. We told her we would trust her judgment on this.
• Her friends and/or roommates were to have our contact information and we were to have theirs.
• She was to be in contact with us by phone at least 2-3 times a week. This allowed me to see how she was doing. A mom can tell a lot even on the phone with her child.

What Could You Add to the List?

If you’re the parent of an adult with special needs, you probably have experience with setting specific boundaries. If you have any to add to the list, please leave a comment so we can learn from you, too.

Thanks,
Jolene

I ran across an intriguing website not too long ago and thought you might like to know about it, too.

www.brandonthewriter.com

The website’s owner is a young man, Brandon Ryan. He was born in 1984 with cerebral palsy. Thanks to the determination and dedication of his parents, he’s able to do much more than the doctors predicted he would accomplish. Still, his life is filled with challenges, both physical and emotional.

The Emotional Struggle

Brandon’s first book, The Emotional Struggle, was written to encourage teens – typical and with special needs – to persevere when faced with challenges. Brandon’s book is a case in point. Because of his cerebral palsy, only a few of his fingers can type. So whatever he writes, including the entire book, requires the hunt and peck method!

Read About Brandon’s Hopes and Dreams

You can read more about Brandon’s hopes and dreams – and he’s got lots of them – at his website. I haven’t read his book yet. If you have, or if you know Brandon, leave a comment so we can learn more about him and his book, too.

Jolene

A few weeks back guest blogger Kathy Guzzo contributed a post about parenting an adult child with special needs.

Meet Harriet Cabelly

At her website, www.rebuildyourlifecoach.com, Harriet Cabelly recently addressed the issue, too. She wrote about the transition she went through after her daughter with disabilities moved to a group home. She explores how her role has changed and evolved.

What Transitions Have You Experienced?

If you are the parent of an adult child with special needs, would you leave a comment about your transitions? Your experiences would be a great help to parents who are raising young children.

Thanks,
Jolene

Many of the parents who visit DifferentDream.com have young children with special needs. But some of them parent older children, and even adult children, who are living with a variety of conditions. So I’m glad to introduce to you a new guest blogger, Kathy Guzzo, who is the parent of a young woman with some serious special needs. Or rather, she will introduce herself in today’s post.

Learning to Parent an Adult Child with Special Needs

Once Upon A Time…

Recently I was thinking back to when our youngest daughter, now 27, was 16.  She was a great student, involved in drama and musicals, played high school basketball, excelled at fast pitch softball, worked as a lifeguard, and hung out with friends. She wasn’t just living her life; she was experiencing it with real gusto.

Then as a junior in high school she started getting sick a lot. Throughout the next two years she was diagnosed repeatedly with mononucleosis, strep throat and even had her tonsils removed. She would be well for a couple weeks then the symptoms would return. She seemed to be home from school more days then she was able to attend. My mother’s instinct told me this was serious so I kept taking her to doctors, nursing her back to health, doing research and asking questions. All while helping her keep up with school and trying to keep us both upbeat.

The Answers Were Just the Beginning

For months I had wanted to take her to a university hospital out of state, but she kept fighting it because she didn’t want to miss more school. Finally, the summer after her high school graduation, we went to the university clinic where they immediately diagnosed her with lupus and with Epstein Barre Replication, meaning that her body replicated the mono virus instead of just allowing her to have it only once.

We were relieved to have a diagnosis thinking she would receive treatment and then could get on with her life as a young adult. Neither of us realized that more than 10 years later her life would be drastically different than what she had thought it would be. The minute she was diagnosed her life was altered forever. Although she graduated, her college experience was not at all what we had hoped and dreamed it would be. Just as her adult life is so different from what we had envisioned for her when she entered high school.

The Metamorphosis of a Mom Begins

Throughout this process I went from being the mom, of a teenager who drove her to appointments, continually talked with doctors, did research, dealt with insurance companies, fixed her favorite meals, talked with teachers, helped with homework, cried with and encouraged her to being the mom of a chronically ill adult child whose role is only to be available if she needs me. The adjustment has been a tough one.

Being the parent of an adult child with a chronic illness is a difficult transition emotionally and practically, and in future posts I hope to share insights and encourage others that may be walking that path right now.

Thanks, Kathy

Thanks for sharing your story so transparently, Kathy. And readers, if have a topic you’d like Kathy to address, please leave a suggestion in the comment box. I’ll pass it along to her.

Jolene