ABLE Act: An Early Christmas Gift

 

This week Alex and many other Americans like him who have developmental disabilities received a wonderful early Christmas present. The passing of a new law known as the ABLE (Achieve a Better Life Experience) Act of 2014 will allow parents to save money for their children who have disabilities without fear of losing benefits. The purpose of this act is to help and encourage families to save funds for their loved ones with disabilities to help provide for their needs. These funds would supplement any government disability funding without fear of losing these important resources. Up until this time, parents have been discouraged from establishing savings accounts for their children with disabilities because these children cannot have their own assets totaling more than $1000 or $2000, depending upon government agency regulations, without fear of losing disability benefits, such as Medicaid or Social Security’s Supplemental Security Income (SSI).

First introduced in 2008, ABLE was promoted by parents of children with special needs as a program similar to those for parents wanting to save money for their children’s college funds. The bill in its current form was introduced last year on February 13, 2013, and was sponsored by Representative Ander Crenshaw, a Republican from Florida. The bill overwhelmingly passed in the U.S. House of Representatives on December 3, 2014, with a vote of 404-17. As a bipartisan effort, Senator Bob Casey, a Democrat from Pennsylvania, and Senator Richard Burr, a Republican from North Carolina, sponsored the bill in the U.S. Senate. This week, on December 16, 2014, Alex’s twenty-third birthday, the Senate also overwhelmingly passed the ABLE Act with a vote of 76-16. On Friday, December 19, 2014, President Obama signed the ABLE Act into law. Not since the enactment of the American with Disabilities Act (ADA) of 1990 has there been such significant legislation enacted to benefit people with disabilities until the signing of the ABLE Act this week.

Essentially, ABLE amends the Internal Revenue Tax Code to allow the use of tax-free deferred savings accounts for individuals with disabilities. Families may use these funds—up to $100,000—to cover expenses for education, housing, transportation, and medical expenses. Under the law, the disability must have been diagnosed before the age of 26, and the child must receive Supplemental Security Income through Social Security. Previously, parents were discouraged from putting aside financial resources for their children with disabilities, fearing that their children would lose important disability benefits. In addition, parents had to make sure their children had limited resources of their own. To ensure that their children would not lose benefits by inheriting assets, parents had to make certain that their estates would not go directly to the children with disabilities but to special needs trust accounts instead.

Because we only recently became aware of the problems of Alex having his own financial resources eventually, we have always set aside money in savings with the idea that he would need money in the future. Knowing that Alex can have limited finances in his own name, we have made certain that his savings account never has more than the maximum the state will allow him to have without losing his benefits that pay for his therapies and any supports he may need in the future. However, Ed and I have also saved money for Alex’s future needs that the ABLE Act will allow us to provide for him securely. As parents, we have a responsibility to take care of our children the best we can, and the ABLE Act permits us to provide for our children with disabilities without penalizing them or us for doing what is right, saving money that can be used to meet their needs. Along with our many blessings we have enjoyed this past year, we are thankful that the American politicians saw the needs of families raising children with disabilities and passed the ABLE Act into law, which will benefit so many families now and in the future.

“And this same God who takes care of me will supply all your needs from His glorious riches, which have been given to us in Christ Jesus.” Philippians 4:19

Annual Waiver Meeting

This week, we had our annual meeting with Alex’s “team,” a group of professionals whom we have chosen to work with him to help him reach his potential, and we were very pleased with how well things went. In August 2012, he qualified for the state Medicaid waiver that provides services to people with intellectual disabilities. In our home state of Indiana, parents typically place their children on the waiver waiting list and know that they will likely wait for many years—often more than ten years—before their children qualify. Recently, changes in this program have made the process move along more rapidly to ensure that those who need services get them instead of having to wait for them. We were especially fortunate that Alex’s waiver application moved along at lightning speed, thanks to a caring and persistent caseworker who helped us with the process, my ability to organize paperwork efficiently, and the grace of God who saw our needs. When he was approved for the waiver within only three months of applying, we felt as though we had won the lottery because this approval essentially means that he is eligible to receive thousands of dollars of support each year of his life. Although we have always somehow managed to provide the therapies Alex needed through our own financial means, we were pleased to receive assistance and relieved to know that he will be taken care of when we’re gone.

Part of the process of obtaining the waiver is learning the alphabet soup of acronyms associated with the program: CIH, DD, ICF/IID, LOCA, etc. Although these abbreviations are probably intended to make referring to their concepts easier, they seem to create a wall between those who know them and those who don’t. During our quarterly meetings with Alex’s team, Ed has noted that he’s glad I understand the lingo, which make me feel as though I’ve mastered some sort of secret handshake. For instance, Alex receives funding from the Community Integration and Habilitation Waiver, more commonly known as CIH. The intention of this program is to keep people out of institutions and in their homes or residential placements within the community, such as group homes. This program was formerly known as the DD Waiver, or the Developmental Disabilities Waiver, but most autism parents knew it better as the Autism Waiver. The CIH is a type of ICF/IID Waiver, or Intermediate Care Facility for Individuals with Intellectual Disabilities; another is the FSW, or the Family Supports Waiver. An intellectual disability is defined as one that begins before age 22, is expected to continue indefinitely, impairs intellectual functioning and at least three of six additional areas: self-care, language, learning, mobility, self-direction, and independent living. To determine services needed, the LOCA, or Level of Care Assessment evaluates how much assistance the person needs with daily living skills. To qualify for the ICF/IID, the LOCA must determine that the person needs 24-hour supervision, as Alex does. To summarize, Alex receives the CIH Waiver, formerly known as the DD Waiver, a type of the ICF/IID Waiver, because his LOCA showed he needs constant supervision due to his autism. Of course, autism parents are used to all these lettered programs after years spent working with SLP, OT, PT, SI, ABA, IEP, and ACR for our kids with ASD. Frankly, it’s a wonder our kids ever learn language when they grow up hearing all the special needs jargon around them.

Aside from all the abbreviations and regulations, the waiver program is intended, like special education, to provide needed services to help the person overcome obstacles the disability brings. Just as the special education concept of “least restrictive environment” works to integrate special needs students in classrooms with typical students, the waiver is intended to integrate people with intellectual disabilities in the community by providing them with support to help them be as independent as possible. In special education, the annual case review (ACR) brings together those providing services for the child to assess progress and needs to determine what services should be provided, and the annual waiver meeting functions in the same way. For Alex, this means our family meets with his case manager who oversees his services, prepares his annual state budget for those services, and acts as an advocate, along with his behavioral therapist, music therapist, and a representative from the company that provides respite care. As in a special education annual meeting, basically everyone in the waiver meeting has an opportunity to make comments as the case manager takes notes and prepares the paperwork to guide service plans for the upcoming year, which requires several signatures of the participants. Even though the meeting took over an hour and required him to sign several electronic documents, Alex was remarkably patient and pleasant the entire time, which shows the progress he has made. In past quarterly meetings, he has complained of being tired or looked for ways to escape, claiming he needed to get something to drink or use the bathroom. Other than checking his watch from time to time, Alex seemed unfazed by having to sit through the meeting, and we were proud of how well he handled himself.

Besides being quite pleased with Alex’s progress, as evidenced by his behavior during the meeting and as reported by his therapists, we were reminded how fortunate we are to have found excellent professionals to work with him who genuinely care about him. The warmth of their interaction and their positive comments about Alex made us grateful that we have the support we need to help him develop the skills he needs in life. For years, we searched for the right people to work with him and often found no one who was willing or able to work with a child diagnosed with autism. Now we have a wonderful team who brings out the best in Alex and supports us as we guide him to develop his skills toward greater independence. After the struggles we have encountered in dealing with the obstacles autism has presented, we finally have professionals who know how to help, which comes as a great relief and a tremendous blessing. Knowing that God’s hand has led these people to us, we believe that He will continue to oversee Alex’s progress as he moves forward to fulfill God’s plans for his life, reassuring us that, in the end, everything will be all right.

“For He has not ignored or belittled the suffering of the needy. He has not turned His back on them, but has listened to their cries for help.” Psalm 22:24

Alex's Questions

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As I explained in my last two blog entries, “Telephone Tracking” and “Telephone Tracking Two,” I’ve been spending time on the phone lately, trying to find information regarding Alex’s blood tests to monitor recent medication changes and his Medicaid benefits. Fortunately, my tenacity paid off, as we received a letter from Medicaid this week stating that Alex still qualified and would continue receiving his disability benefits. This came as a huge relief that his file had been updated correctly. Also, I called his psychiatric nurse practitioner’s office this week to get the results of his blood tests, only to discover that they had never received the test results. Then, I had to call the lab to request his results be faxed (or faxed again, as I’m not sure what had happened) to the nurse practitioner’s office. Once they received the results, her nurse called to tell me that the results were normal and that he should continue on the current medication dosages. Again, this news was a blessing because he is responding well to the slight increases in medication, and we were thankful that his blood tests indicate no problems with these changes. Although I would have preferred that gaining information about his benefits and health had not required so many phone calls, I’m pleased that in the end, the news was good.

While I’ve been on the phone acting as Alex’s personal assistant, he’s been busily coming up with questions for me to answer. When he first came home from the hospital this summer, he seemed to be in a mental fog, his senses dulled by the medications needed to keep him calm. Over the past several months, he’s gradually emerged from this drowsy state, and we’ve been pleased to see his personality and curiosity return. In fact, when he was little, Ed used to call Alex “Mr. Curious” because he was always checking out things and asking questions about them. We enjoy his inquiries because not only do they show he’s alert and aware, but they also give us a glimpse into how his mind works.

One area of his questioning has to do with the past. He has an interest in things that happened before he was born or things he can’t remember because he was too little. As I’ve explained in previous blog entries, Alex qualifies everything by numbers, so calendars and clocks and dates are very important to him. The past few weeks, he’s been asking about when various businesses in town opened. Specifically, our town has a new hospital that opened in August, and Alex wanted to know more about the old hospital it replaced, especially since he was born in the old hospital. Fortunately, I was able to find some information online about the old hospital and when it opened, which was exactly what Alex wanted to know. In addition, he has had a recent fascination with the part-time job I had while I was in college as a waitress at the Big Wheel Restaurant. Not only did he want to know the exact dates when I started and stopped working there, but one day he also wanted me to tell him everything that was on the menu. This seems to be another nostalgic exercise for him because although the Big Wheel closed a few years ago, Alex remembers going there when he was younger. To enhance his trip down Memory Lane, he has been asking me to fix one of the special dishes from the Big Wheel, the Wheel Steak.  Perhaps eating a familiar dish from the restaurant jogs his memory so that he can remember the times he spent at the Big Wheel. Now I need to teach him about leaving a tip for the waitress.

Besides reminiscing, Alex has also been spending a lot of time thinking about theological concepts, but, of course, they reflect his unique perspective. Lately, he has a great deal of curiosity about what God can do, where heaven is, what it will be like, and what we will be like when we get there. Although I have no good answers to his good questions, he has been satisfied when I have told him that only God knows or that he’ll have to wait and see when he gets to heaven.  Since I’ve been intrigued by some of the questions he’s posed, I’ve been jotting them down whenever he asks them. Here are some of Alex’s recent inquiries:

“Has God used the graphing calculator before?”

“Does God know all the pi digits?”

“Where are heaven and hell?”

“What is the address for hell?”

“How long does it take to get to heaven?”

“Can you call heaven? What’s the phone number?”

“Is there a Heaven.com?”

“What road goes to heaven?”

“Are there clocks in heaven? Will there be time in heaven? Do they have stopwatches in heaven? Do they have timers in heaven?”

“How much will we weigh in heaven?”

“What will our heavenly bodies look like?” (after I told him we’d have new bodies in heaven in response to his question about weight in heaven)

“Will you have birthmarks in heaven?”

“What color will your eyes be in heaven?”

“What voice will you have when you get to heaven?”

“Can you sleep when you get to heaven?”

“Will people have tempers in heaven?”

Besides all of his interesting questions about God and heaven, Alex has also asked some things that make me wonder how his mind works. One day, he suddenly asked, “Do dogs have better memories than cats?” Even more puzzling was the day he apparently wanted to try parenting and asked, “Can you [meaning “I”—he still reverses pronouns] pretend to have a baby?” As he has been more alert, he’s paying more attention to what people are saying in person or on television, which has made him ask about words he doesn’t know. For instance, while watching the television show The Big Bang Theory the other day, he heard one of the characters use the word befuddled and asked us what that meant.  I was tempted to tell him that I was befuddled when he asked about pretending to have a baby, but decided against that. Finally, another question he’s frequently been asking me lately is when I’m going to retire. I’m not sure if he thinks I’m old, or if he’s just looking forward to my being home all the time.  I guess he figures that if I retire, that will free my time to make phone calls on his behalf and answer all his questions about life. In the meantime, I’ll keep working at the balancing act of my part-time teaching job and my full-time job of being Alex’s advocate, teacher, and mom, which is my favorite job of all, especially when he entertains me by asking questions that make me think about all the good things we have ahead when we actually know what heaven will be like.

 “Call to me and I will answer you and tell you great and unsearchable things you do not know.” Jeremiah 33:3

Telephone Tracking Two

In last week’s blog entry, I described the various phone calls I made to Alex’s psychiatric nurse practitioner’s office and the laboratory where we have his blood tests done, trying to make arrangements for a blood draw. After talking with nurses and laboratory technicians back and forth, we were finally able to straighten out the details. As they say, “All’s well that ends well,” and the tests came off without a hitch. Thankfully, Alex cooperates nicely with blood draws, and yesterday we were able to do the follow-up tests easily and quickly. Of course, I decided to make a quick call to the lab before we went, which made things go even more smoothly, as the lab technician had everything arranged in advance before we arrived. St. Anthony’s Chesterton Health and Emergency Center has been a godsend to us because all of their staff are kind and pleasant and efficient. Now, we wait for the test results to see if Alex’s increased medication levels are within proper levels. I’m betting that I will have to call his nurse practitioner’s office to get the results this week, but since my telephone skills are sharp, I will be prepared.

In addition to checking on Alex’s medical tests, I have also been dealing with Medicaid by phone the past couple of weeks. Before Christmas, Indiana Medicaid sent me a letter requesting that I fax a copy of Alex’s financial records to them so that they can make sure he is still eligible. Although Alex has limited financial resources, he has a handful of shares of Disney stock his aunt and uncle gave him as a Christmas present a few years ago, and he has a checking account that Social Security wanted him to have as a place to deposit his disability checks. After sending a couple of disability payments to that account, Social Security decided—no surprise to us—that Alex wasn’t capable of managing his financial affairs and named me as his representative. Consequently, his checks are deposited in my checking account so that I can pay for his expenses, and his checking account basically goes unused.  Nonetheless, Medicaid needs to establish that Alex has minimal assets, and they require that I send them statements showing the value of his stocks and the balance of his checking account.

The day after I received the letter from Medicaid, I faxed copies of the financial records to them, as they requested. Imagine my surprise and frustration to receive a letter this month stating that Alex’s Medicaid benefits would be discontinued as of February 1^st due to my “failure” to submit his financial records. Although we have private health insurance that pays for most of Alex’s medical expenses, Medicaid acts as a secondary health insurance for him and pays for his behavior therapy. In the future, Medicaid will pay for his support services, including the day program we hope will enroll him and transportation there, as well as eventually a supported living program. Losing these benefits would definitely have a deeply adverse effect on Alex’s future and would make the hours I spent filling out paperwork and pleading his case meaningless. I knew that I was going to have to intervene right away to make sure Alex didn’t lose these valuable resources.

As I pulled the financial records from his files, I also found a document with a time and date stamp proving that I had faxed the information they had requested in a timely fashion last month. I decided to fax all of these forms once again to prove I had not “failed” to submit them. In addition, I called Medicaid to attempt to straighten out this mess.  After waiting through the options menu and spending some time on hold, I spoke to an agent and explained what had happened. After going through his files, she discovered that they had, indeed, received the information I had faxed last month, but no one had bothered to enter it into the computer. She assured me that she would take care of updating his files, and there shouldn’t be a problem. A few minutes later she called me back to tell me that Alex would not be eligible based upon his resources. I asked her to explain that because I knew that he had the same, if not less, finances that he had when he applied. She told me that he must have $1500 or less. After adding his accounts again, I knew that he had less than the amount she stated, but decided not to argue with her and thanked her for her help.

Concerned that this matter still was not resolved, I decided to call again this week to make sure that Alex’s file had been corrected. Once again, I waited to speak with an agent, who pulled up Alex information and said that all of the data needed was there and that he was under the limit for resources. However, no one had bothered to send this information on to the state, so she assured me that she would take care of forwarding this information. As I did the last time I called the Medicaid office, I made notes of what they told me in case I need this information for future reference. Still not convinced that they have Alex’s information accurately recorded and sent to the proper department, despite their assurances, I will once again call this week to make sure his benefits will not be jeopardized by the careless record keeping of others.

As someone who takes organizing information to extremes, I have little patience with those who do not keep good track of important records, especially when my son’s future could be jeopardized. In talking with other parents, apparently our experience is not uncommon. Parents of special needs children have enough responsibility taking care of their children’s needs without having to supervise agencies who should be helping parents instead of making their lives more difficult by failing to keep track of information and accusing the parents of being noncompliant. I’m sure we will work out this issue soon, and I’m glad I have the organization and tenacity needed to accomplish this task. However, I’m still working on patience. I pray that God will help me with that so that I will learn to wait in peace instead of frustration, especially since I have at least two phone calls to make this week. As I make sure that Alex’s medical and financial needs are met, I’ll simply be fulfilling one of my roles as an autism mom—Alex’s personal assistant.

“Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that He has promised.” Hebrews 10:36

Parent or Guardian

Recently, I read two excellent blog entries written by mothers of children with autism who explain the process involved in being named their children’s legal guardians once they reach the age of eighteen.  Both mothers candidly describe the heartache they feel in taking legal action to make sure they will be able to make critical decisions for their children who cannot make those decisions for themselves. As Kim Stagliano explains in “Autism Sucks: And Then I Die”: “We have to petition a judge to take away her rights as an adult so that we can make her medical, legal and financial decisions because thanks to her autism, she is not able to make safe choices for herself.”

Similarly, Liz Becker shares her internal conflict about becoming her adult son’s guardian in “Guardianship and Autism,” noting, “In order to become the legal guardian and conservator for my autistic son, the court had to first find him incompetent to manage his own affairs. It was (and still is) a very emotional process. It is something that I had to choose to initiate because I knew Matt needed me to do it--but that doesn’t mean I took it in stride. It literally took years of thoughtful contemplation to even begin the legal process.”

Although guardianship laws may vary somewhat from state to state, the State of Indiana’s website explains the process quite clearly under the Family and Social Services Administration page: “Guardianship is an important consideration when young adults with developmental disabilities reach age 18. It is important for parents to realize that under the law everyone is considered to be an emancipated adult (their own legal guardian) at age 18, regardless of their disability. If the parent believes it is necessary for them to gain or maintain guardianship of their adult child after the age of 18, this can only be done through a court proceeding, which may be lengthy and expensive. Any action to establish guardianship of an adult with a disability must be filed in the probate court of the county of residence of the person for whom guardianship is being sought. Filing for guardianship is generally done with the assistance of an attorney, and includes a petition, followed by a hearing to prove that the person is incapacitated (unable to serve as his or her own guardian). Guardianship by another person by definition restricts that individual's rights and freedoms as a citizen, and should therefore not be entered into without serious consideration, including exploring alternatives which may better suit the individual's needs while still providing legal protection.”

Some of these rights that can be restricted once a disabled adult is deemed incapacitated or incompetent and requiring a legal guardian include the right to obtain a driver’s license, the right to own property, and the right to vote.  If parents wish to have some control over their disabled adult child’s affairs but not obtain guardianship, they may have legal papers drawn naming them as health care representatives and/or giving them power of attorney. In addition, Social Security may name a parent as a representative payee to oversee the distribution of disability benefits; similarly Medicaid may also name a parent to act as the adult child’s health care advocate. However, at times the adult with a disability may be required to sign his or her name on paperwork.

Although Ed and I have discussed and debated the pros and cons, we have opted not to seek legal guardianship of Alex at this point. Certainly, I respect the decision of those who have sought legal guardianship of their adult children and can imagine what a difficult decision that must be. When Alex was hospitalized last spring, we realized for the first time that we could no longer make some health care decisions for him since he was an adult. Therefore, we quickly had an attorney draw up legal papers naming us as Alex’s health care representatives so that we could make decisions regarding his medical care. I would recommend that parents of children with autism have this paperwork in place and ready when they turn eighteen instead of being caught unprepared in an emergency, as we were. We had assumed that as Alex’s parents, we would be able to make medical decisions for him, but we were wrong. Now that we have the legal papers naming us as Alex’s health care representatives, we take copies with us to every medical appointment so that we can be directly involved in Alex’s health care.

When we were filling out the countless forms last spring to obtain disability benefits for Alex, the question arose over and over as to whether we were Alex’s legal guardians. I found this somewhat surprising because none of my friends with adult children who have disabilities have sought legal guardianship for them. Nonetheless, I asked one of Alex’s caseworkers how common parents having legal guardianship is for adult children with autism, and she said that those whose parents could afford the legal fees typically obtained guardianship.  Since Social Security has named me as Alex’s representative payee to oversee the spending of his disability benefits, and Medicaid has approved me as his health care representative, we don ‘t feel the need at this point to seek legal guardianship. The government allows us to manage his finances and benefits, and the health care representative legal papers permit us to make decisions regarding his medical needs. For everything else, Alex is capable of signing his illegible signature, and he seems proud that he can do that for himself.

With the upcoming elections, Alex eagerly awaits his first time to vote for the President. As he has in every election since he turned eighteen, Alex considers the candidates and issues before making his decision and exercising his Constitutional right to vote. Just as I have in the past, this year I will again help him apply for an absentee ballot, for which he qualifies as a disabled adult, and he will proudly mark his ballot at home. To think of denying Alex his right as a citizen of the Unites States and his joy in participating in one of the rites of adulthood reconfirms our decision not to seek legal guardianship for him. In addition, the eternal optimist in me hopes that someday he will be more independent and not need us to make decisions for him. Relying on faith, we pray that having him declared incompetent will never be necessary, and we know with God all things are possible, including healing that would allow Alex to enjoy fully the freedom we cannot deny him at this point.

“Rabbi,” His disciples asked Him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”

“It was not because of his sins or his parents’ sins, “ Jesus answered.  “This happened so the power of God could be seen in him.” John 9:2-3

Is There a Doctor in the House?

This week was the first week this summer that we didn’t have any appointments scheduled and that I didn’t have any phone calls to make. Of course, these unplanned times sometimes allow unexpected surprises to arise. As I described in a previous blog entry, “An 'Aha!' Moment,” Alex was diagnosed with a yeast infection in and around his mouth about a month ago. We’ve been treating the infection with a once-a-week dose of the anti-fungal drug Diflucan along with an anti-fungal ointment on his face. He finished the fourth and last dose last Saturday and seemed to be doing better. However, on Wednesday morning, he awoke with his tongue coated in thick yeasty substance.

Since he would be due another dose on Saturday, and we were out of the prescription, I decided to call his doctor and make an appointment for him to see if he needed more anti-fungal medicine. I thought we were fortunate to be able to see the doctor early that afternoon, but I didn’t have any idea that our plans would suddenly change.

When we arrived at our family doctor’s office, the receptionist asked for our insurance card, which I gave her. I also gave her Alex’s Medicaid card that had arrived in the mail last week with instructions to present it any time he was going for medical appointments. She told me that she didn’t think they took Medicaid, but she would check. I explained that he was still covered under our health insurance policy (since Medicaid had recommended that we keep him on our policy), and we would pay any expenses the insurance would not, as we always had in the past.

When she went to ask another receptionist about Medicaid, I heard the other one indignantly ranting how Medicaid never paid for anything, so they never took Medicaid patients. She then told me rather rudely that they would not see Alex because he has Medicaid. I explained that Alex had recently been approved for Medicaid because he was disabled, and I assured her that we still had private insurance for him, plus we would pay ourselves for what expenses were not covered.  In response, she condescendingly informed me that the doctor could not legally see Alex since he has Medicaid now; we would have to find another doctor. Annoyed by her attitude and relieved that Alex wasn’t very sick, I told Ed and Alex, who were sitting in the waiting room unaware of what was transpiring at the reception desk, that we were leaving, and I would explain why once we were in the car. Medicaid apparently necessitated needing to find a new doctor for Alex; and the receptionist’s nasty attitude made me decide that I would find a new doctor for myself, as well.

Because I wanted a doctor to check Alex’s mouth, we decided to take him to St. Anthony’s Express Care here in town, which is affiliated with the hospital where Alex stayed in Michigan City, as well as the ER in Chesterton where we took him last month when the infection erupted. Fortunately, they do take Medicaid patients and were willing to see him that afternoon. All of their staff were very kind to us, and the doctor was sympathetic about our experience about basically being dumped by our family doctor. After examining Alex, she thought his mouth was healing, but she gave us two more doses of Diflucan in case he needed them. In addition, she suggested the names of three family doctors she thought would take Alex as a patient now that he has Medicaid. Grateful for her help, we headed home with the prescription and information she provided.

That evening, I began researching Indiana Medicaid providers online and found the doctors the urgent care doctor had recommended along with the names of family physicians in two groups here in town who have a good reputation. Jotting down names and phone numbers, I planned to make phone calls the next morning to see if they were taking new patients and would accept Alex. The first group I called was not currently taking new patients, and they would not accept new patients with Medicaid. The second group was taking new patients, but they also would not accept new patients with Medicaid. The third group had two doctors accepting new patients, but they could only take new patients with Medicaid if Medicaid assigned the patients to their office. Frustrated with the lack of progress I was making, I decided to call Medicaid for assistance.

First, I called the phone number on the back of Alex’s Medicaid card, and while the woman was very nice, she recommended that I check the website, which I had already done. She then suggested that I call our local office who may be able to help more directly than her state office in Indianapolis. When I called the local office, the woman with whom I spoke was also very pleasant and apologetic that I was having trouble finding a doctor for Alex. She recommended that I call another Medicaid office in Indianapolis that coordinates services and providers. When I called that office, the man took all of the pertinent information about Alex regarding our address, phone number, file number, Alex’s birthdate and Social Security number. He then told me that he would have to speak with Alex since he is legally an adult. I explained that Alex’s autism is his disability that qualified him for Medicaid and that he doesn’t communicate well. I also explained that besides being his mother, I have medical power of attorney for him and that Medicaid has designated me as his authorized representative. Very politely, he said, “Mrs. Byrne, I believe everything you’re telling me, but because of HIPAA [health care privacy] laws, I cannot discuss your son’s case without his permission or the legal documents showing that you are his medical power of attorney.” He then gave me the information as to where I need to send a copy of Alex’s medical power of attorney papers so that he can talk to me instead of Alex.

While I certainly understand an individual’s right to privacy regarding health matters, the extent to which this law is enforced strikes me as ridiculous, especially when it comes to a parent seeking help for a disabled adult child who cannot advocate for himself/herself. Nonetheless, I will fax yet another copy of Alex’s medical power of attorney papers in hopes that we can find a doctor for him. Fortunately, Alex is rarely sick, so he doesn’t need a doctor often. His nurse practitioner’s office accepts Medicaid, so she can continue to oversee the medications that control his anxiety and agitation. Until we find a doctor for him, we’ll just plan to take him to St. Anthony’s Express Care here in town or their ER in Chesterton because we know they will treat him, and we have been extremely pleased with the care they provide. I’m sure God will provide a good doctor for Alex, but once again, we will need to be patient until He reveals his plans.

“Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that He has promised.” Hebrews 10:36