milestones autism resources
Q: As a parent, I want to help my child to have a healthy understanding of his sexuality. What is the best way to approach the subject during early childhood and later during the teenage years?
A: Most parents are concerned about teaching sex education to their child, but find resources are lacking to help them do it. First, it is never too young to start addressing sexuality. Schools don’t start teaching sex education until 5th grade, but it is recommended to start age appropriate education earlier, especially for individuals with Autism Spectrum Disorder (ASD). First, educate your child about gender differences early on (e.g., toddler and school age) through use of pictures, Social Stories™ and game playing. Remember to use different types of body sizes, hair style and clothing for both males and females. Use life-size posters, anatomically correct dolls and other hands-on visuals while teaching. Teach the similarities and differences between genders, while still encouraging non-gender stereotyped play and activities.
Next, teach about body parts using anatomically correct words such as penis, vagina, breasts, pubic hair and so forth as it is developmentally appropriate. They also need education on body fluids such as tears, mucus, saliva, sweat, blood, urine, semen and menstrual blood – explaining what body parts excrete what fluids. Again, use of pictures, Social Stories™ and other hands-on learning tools that are age appropriate will be the most helpful.
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Q: What is a STABLE Account and how do I know if I’m eligible? How can I use the money in my STABLE Account?
A: STABLE stands for State Treasury ABLE. It is an account for individuals with disabilities that is generally not counted as a resource when determining Medicaid or Supplemental Security Income (SSI) eligibility. Although STABLE is the name for the Ohio program established after the federal Achieving a Better Life Experience (ABLE) Act was passed, it is not limited to Ohio residents. A STABLE Account is not a trust. To open a STABLE Account, a person must qualify as an “eligible individual,” which means that the person developed his or her disability prior to the age of 26. Additionally, an eligible individual must be entitled to SSI or Social Security Disability Insurance (SSDI), have a condition listed on the Social Security Administration’s List of Compassionate Allowances, or be able to “self-certify” the disability and diagnosis. STABLE’s enrollment is only available online and offers an eligibility quiz to help individuals identify if he or she is eligible to enroll.
A STABLE Account can receive combined deposits of up to $14,000 per year from any source, including the eligible individual. The maximum amount that can be contributed over the eligible individual’s lifetime is equal to the sponsoring state’s 529 plan, which in Ohio is $426,000; however, the Account balance over $100,000 will be considered a resource if the eligible individual is also an SSI recipient.
The eligible individual has direct access to the funds in the STABLE Account and can even request a reloadable prepaid debit card. It is the responsibility of the eligible individual to use the funds correctly. STABLE Accounts should only be used for qualified disability expenses, which are expenses incurred when the person was an eligible individual, the expense relates to the disability, and the expense helps the eligible individual maintain or improve his or her health, independence, or quality of life. Examples include housing, transportation, education, assistive technology, employment training, legal fees, personal support services, health and wellness, and financial management. If an eligible individual expends funds from the STABLE Account for non-qualified disability expenses, the eligible individual will pay income tax, plus a 10% penalty, on the earnings of the non-qualified distribution. An improper distribution from a STABLE Account could also be counted as income when determining the individual’s eligibility for means-tested government benefits, like Medicaid or SSI, so understanding the rules and keeping accurate records is important.
For more information or to establish a STABLE Account, visit www.stableaccount.com or call 800-439-1653.
-Amanda M. Buzo, Esq.
Amanda M. Buzo, Esq., is the Executive Director of Community Fund Management Foundation, a non-profit special needs trust advisor. Prior to joining CFMF, Amanda was a special needs and estate planning attorney.
[Opening photo: stableaccount.com]
I want to start out the story by focusing on present day. A flash forward of sorts.
We are the lucky parents of a wonderful 12-year-old girl. She enjoys her adapted dance class, ice skating, playing with her IPad, eating sushi and dressing up. We are in a good place in that we can communicate with each other, express our frustrations verbally and actually play together in ways I did not always think possible.
Knowing these things about my girl Cora is a big deal.
Looking back a few years, when Cora was 2 1/2, my husband and I faced our denial that something was not right. The typical baby and toddler books were not working. Our daughter was not “The Happiest Baby on the Block” and techniques from the Super Nanny reruns were failing miserably.
Eventually we found ourselves at a doctor’s office receiving an autism diagnosis. As freaked out as I was with the diagnosis, at least we now knew and could get a plan together to deal with it. I was eager to hear what the next steps were. I was looking for the doctor to give us a “treatment plan” like I had received from every other doctor visit up to this point. For example, “Take two aspirins and call me in the morning” or “Eat right and exercise.”
Unfortunately, that straightforward medical advice I was looking for did not happen. But we did get a web address to an organization called Milestones Autism Resources.
After coming to terms with the diagnosis and what it meant for us as a family, we found ourselves at the Milestones website. Keep in mind, the World Wide Web has many sites about autism, but for us, milestones.org was a bridge to help get our daughter to where we are today.
For example, we found local resources, references to services and most importantly a notice about a parent training series. This series became the foundation of that plan that we were longing for. It was at that Milestones training where we connected with other parents and realized we were not alone. We were presented with techniques that we could practice and use to reach Cora. We were shown how to motivate her, how to break down play tasks to small steps to build success and eventually implement techniques to help her expand her language and social skills. Most importantly, with Milestones, we were provided a safe place to ask questions and knowledgeable people to help answer them.
Over the next few years, through doctor appointments, therapy social groups, token boards, PEC charts, etc. — we are where we are today. And through my daughter’s hard work and support from Milestones, we can tell you that although it was not a journey that we asked for, it is a journey we were able to navigate because of the accessible and affordable resources and training from Milestones.
Even now, when I start to stress about what my daughter’s transition to adulthood will look like, I know we will not be on this road on our own. I know I can reach out to the phenomenal team at Milestones and ask them for guidance and support.
-Carrie Gedeon
[Opening photo: multipleXposure photography]
Every child is their own person – complete with specific ways of relating to the world. For families that have multiple children with ASD, navigating this journey can be much like a puzzle. What works for one child, does not always help others to thrive. This is a common challenge – one that comes often with a sense of much frustration for parents – that we aim to support through our work at Milestones.
In 2005 we met Debra Greene. Debra has two sons on the autism spectrum with very different needs. That year, she received information about Milestones through an intervention specialist of one of her boys. She attended the annual conference where she recalls being “exceedingly impressed, especially with the wide array of relevant workshop offerings.” Debra was encouraged, knowing that she had found an organization that could help her.
In search of more information, Debra attended her second conference the following year and soon after began volunteering at the Milestones office. She wanted to share the support that she had received with other families in need, having experienced the benefit of being a part of the Milestones community. Inflatable Church For Sale “Milestones was, and has been a valuable resource during difficult seasons of care-giving for a loved one with Autism,” says Debra. “Their efforts helped me and my family tremendously. I wanted the opportunity to give back by helping others who were going through what I went through.”
Over time, the Greene family was able to see the benefit of engaging with Milestones in various ways: “The Milestones Website has been a wonderful resource for me, providing many tools I’ve used with my sons Aaron and Matthew.”
Milestones has assisted the Greene family in many other ways, including:
– Providing a platform for Debra’s son, Nick, to participate in a conference workshop for siblings of children with autism.
– Helping to construct a plan for Matthew to transition from high school to adult agency placement. Specifically, Beth Thompson’s attendance at IEP meetings and assistance in sorting through the data collected from 5 different agency tours. “Also,” says Debra, “Beth and Haley [Dunn] met with Matt’s dad and I, helping us to outline our short and long-term goals for Matthew.”
– Awarding Aaron an unpaid summer internship which increased his social and employment skills, helped him come out of his shell, allowed him to learn to follow directions and multi-task – all in a safe and nurturing environment.
– Allowing Aaron, a gifted musician, to play his keyboard at Milestones events where he has developed his performance skills and become more self-confident. With additional staff support, Aaron has played piano at other venues in the Cleveland area, to which the staff has periodically provided on-site aide support.
Debra continues: “The collaboration Milestones has with other agencies including John Carroll University and Jewish Family Services have also been wonderful for our family. They have provided the opportunity for our children to be involved with other young adults and become more social.”
Debra now serves on the Milestones Board of Trustees. “I love my board involvement with Milestones and I’ve learned so much. I am constantly impressed by the people serving on the Board who so passionately give of their time and talents – even if they have no direct connection to someone with autism.” She is also involved on the committee which helps plan the Milestones annual conference by providing ideas for topics that are relevant to parents whose children have autism.
“It is such an incredible gift to have an organization like Milestones Autism Resources as our guide each step of the way.” – Lisa Danielpour, Parent
Lisa Danielpour offered to share her journey with us – and all of you. Hear more, in her words:
Aaron is my first born. When Aaron was 18 months, I started to wonder. Why isn’t he talking yet?
As Aaron reached 3 and 4, his development became even more alarming to me. Why do the other cute little preschoolers talk to each other in logical paragraphs while mine perfectly recites the script to endless Disney movies?
At each stage of development from childhood to adulthood we have navigated different issues. Trying to figure out, how can we best help him?
I’ve learned to trust my gut and build a team Inflatable Church For Sale of people who combine expertise and supportiveness.
When Aaron was young, I didn’t know then that Ilana Hoffer Skoff and Mia Buchwald Gelles were also struggling as parents of children with autism, they used their experiences to create this incredible organization, Milestones. Helping countless individuals, families, and professionals. And lucky us.
With the support of an incredible team by our side, my amazing son Aaron was able to graduate from Case Western Reserve University with a double major in Computer Science and Psychology.
It is such an incredible gift to have an organization like Milestones Autism Resources as our guide each step of the way. Before 2016 concludes, I encourage you to support Milestones, as you will, in turn, support families like mine.
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