Transitioning into Adulthood with our Angels.

How to help your loved one with Angelman Syndrome transition into adulthood. Find resources for local programs after they have aged out of school and long-term care options.

By Carol Hare, Mother to Jack, age 22. The Hare family is from Texas.

As my angel’s 8th birthday approached, I was already thinking about what it would be like when he turned 18. Where would he be cognitively? Would we still be here and able to care for him? Also, would we be able to meet all of his needs? If not, how can I plan now to help secure his future? Are there programs that I can apply for today? How do I find out about them?

Now that my son is 22 and is a legal “adult”, my questions are validated. Please know that no one will be “knocking on your door” to provide you with that perfect answer for your child’s future with special needs. It is imperative that you be their advocate by doing the research needed for their future. I see it as part of my purpose to provide the best future possible for our son. Now, and after my husband and I are gone.

Without access to computer information over 14 years ago, I began by calling my local MHMR (My Health Mental Retartadtion) office to gather my options. I registered my son and was assigned a case manager. She became my best advocate for him. She also became my “go-to” for information. After her visit to our home and assessment of my son, she provided me with the options the State offers here in Texas. 

The options that I consider are the “Golden Tickets’ are first Home Community Service (HCS).  Secondly, is a Community Living Assistance and Support Services (CLASS). These are the best options available for now.  Once you are in the program, it is for the life of your child. They provide needs such as: Medicaid Waiver program, group homes, and respite care (or you, as the parent being paid as the caregiver). Furthermore, speech, occupational, and physical therapies are covered along with the costs of prescriptions. Lastly, adult special needs schools, medical equipment like a Rifton bicycle, remote-controlled bath chair, and wheelchairs, etc. 

Next, you have an option to be on an interim program while you are on the waiting list.  I understand qualifying is more strict now than in the past. Thankfully our case manager helped us get on the Medically Dependent Children’s Program (MDCP) for about 9 years. I kept a spreadsheet and would call their office in Austin every six months to see what number he was on the waiting list. The last time I called he had actually gone down on the list.  I then gave them the recorded information I had from my spreadsheet, and low and behold he made it to the top of the list within a month after this mistake.  

I encourage all of you to put your angel on all of the waiting lists your states have to offer. It could possibly take up to 13 years in some states to get on these “Golden Ticket” programs, but, do not get discouraged. Even if you are thousands down on the list, or the funding freezes, it will eventually open up later and flush through hundreds of names at a time. That is why it is imperative to get your child’s name on the list now. You can always deny it when they call, but I highly discourage it. There are no guarantees we will outlive our angels, and we need to ensure the best future possible for them.

After about 8 years on the MDCP program, a nurse’s assessment claimed my son was no longer “mentally retarded”, (a miracle perhaps?), and didn’t have a medical need to be on the program. The State will work to weed people off the list in this way. It is a crying shame they do this to our families in need. Therefore, let it be known this could happen to you. I know of other families that had this same thing happen to them. I had to go to court over the phone “TWICE” to prove that the gap has only widened as the years have passed. The need is greater now than it was before! They claimed no one had ever fought for this twice after being denied. We finally gained access back on the interim program and trust me, the fight paid off in the end.

This interim program helped pay for prescriptions, and respite care, and also had a Medicaid waiver, for many years.

We made it to the top of the list of both HCS and CLASS programs but chose HCS because even though they are both for the life of the child and provide almost everything the same, HCS had the added benefit of the group home. This could be a valuable option when the time comes. 

In addition, I also encourage for medical purposes to become the Guardian of your nonverbal angel. It is the reality that they cannot make their own medical or financial decisions even with our highest functioning angels. I am asked for it all the time through the state program assessments, etc. and I feel it will cover any need in the future, rather than a “Power of Attorney”. It is not always seen as sufficient in some medical facilities.

When my son turned 21, he was no longer able to go to our precious Children’s hospital, use his pediatrician, pediatric neurologist, etc.  We were able to keep his pediatric dentist and eye doctors. We had to change his insurance carrier from the “Star Kids” program at the Cooks Children’s Hospital to Star Plus. This meant we had to find a “family practitioner” in-network who accepted new patients with special needs and worked with a hospital that we preferred. It has taken months, so start before their 21st birthday on this task. You definitely do not want to play the lottery on being assigned a doctor who does not care for the well-being of our angels. Trust me, I have been through this experience as well. It is worth doing your research. Ask other parents if you value their opinion in finding doctors who truly care.