They’ve Graduated! What Next?

 They’ve Graduated! What Next? by Paula Lowther

Having a child with a developmental disability is a journey many of us were not prepared to take. ”On the job learning” becomes the norm through each stage of our precious children’s lives. We read, take classes, meet other parents, join Facebook Groups, talk to therapists, teachers and school counselors, and surf the internet immersing ourselves in self-education. If we’ve done our homework, we know that federal regulations will permit a child with a disability to stay in public education until the end of the school year in which the child reaches the age of 22 (https://ed.sc.gov). This gives the family more time to plan and prepare. This also needs to be tailored to the needs and desires of the child. 

We are fortunate in South Carolina, as there are two model collegiate programs designed for young adults with special needs, one of which is located right in York County at Winthrop University: WinthropLife. The other is the ClemsonLife program at Clemson University. Both programs meet the requirements to be a federally designated Comprehensive Transition Program, which translates to dollars for school through grants and financial aid. Each of the programs have detailed web sites where they share all you need to know about your child’s eligibility. 

Not all children are eligible or interested in such programs, though. What then? Be sure to familiarize yourself with the South Carolina Department of Disabilities and Special Needs website. There is tons of information there, including a page for the Home and Community Based Services waiver program. Did you know that prior to 1981, institutionalization was the only program available, because there were no services available in the community at that time. While we are thankful for the array of services and projects our children can participate in at this time in York County, it is not a perfect situation.  In this post-COVID era, staff shortages are common in the caregiving workforce, which creates a gap in care. There is much to be done in growing this workforce, and perhaps training programs can be cultivated for high school students who may be interested in these roles. Regardless, be sure to get your child enrolled for services by calling 1-800-289-7012 to begin the process.  

Some states have programs where family members can be paid caregivers for their loved ones. Sadly, the Carolinas have not joined their ranks. Currently the twelve states include Colorado, Kentucky, Maine, Minnesota, New Hampshire, New Jersey, North Dakota, Oregon, Texas, Utah, Vermont, and Wisconsin. There has never been a more opportune time for parents to become politically active on behalf of their children. Learn who your state legislators are, and write, call, and ask for an audience to present your case and petition for expansion of services.

Creativity is key as you brainstorm ways to meet the needs of your young adults. Pooling resources and services with other parents, seeking out HUD housing, and the creation of innovative models that may combine elder-care and young adults with special needs- Get creative! People need not live in isolated “mono-chromatic” communities.  UNC Center for Excellence in Community Mental Health is creating a “Tiny Home Village” for those with mental health issues. 

https://www.med.unc.edu/psych/cecmh/services/community-services/tiny-homes-village/

This is just one example of creativity at work in the Carolinas. Another is the HOPE-NC organization, https://www.hopenorthcarolina.org  whose mission statement is “Creating inclusive communities where people of all abilities and ages experience a sense of belonging through community reimagined."

In South Carolina, there are currently multiple providers of residential services, including supportive and independent living offering different levels of support. Your local Adult Enrichment Center (AEC) can provide job training services. As a parent or caregiver, knock on doors and advocate for your young adult, and create opportunities at places of service that are open to hiring those with developmental disabilities. Our family secured positions for our daughter at both Harris Teeter, and then Publix. She was collectively employed at these two stores for seven years, before being trained for a job at the Humane Society of Kershaw County where she was the “Cat Lady!” She was responsible for the cat room, cleaning litterboxes, feeding and loving her four-legged wards.

SC Public Radio has a 4-minute piece on the push for disability housing communities in SC amid limited options. That was aired in March of this year. Here is the link: https://www.southcarolinapublicradio.org/sc-news/2023-03-07/renewed-push-for-disability-housing-communities-in-sc-amid-limited-options

The possibilities are endless, but it will take collaboration, creativity and innovation. Are you up for it?

List of resources:

ClemsonLife Program- https://www.clemson.edu/education/programs/programs/culife

Winthrop Life Program- https://www.winthrop.edu/coe/winthroplife/

SC Dept of Education- https://ed.sc.gov

SC Department of Disabilities and Special Needs- https://ddsn.sc.gov

UNC Center for Excellence in Community Mental Health- Tiny Homes Village- https://www.med.unc.edu/psych/cecmh/services/community-services/tiny-homes-village/

HOPE-NC- https://www.hopenorthcarolina.org

SC Adult Enrichment Centers- Day programs and job training services plus!- https://www.adultenrichmentcenters.org/about/

Paula Lowther is a nurse practitioner, writer, and patient safety advocate currently based out of Fort Mill, South Carolina and is the mother of an adult daughter with special needs, and a typical young adult daughter.

Creating inclusive communities where people of all abilities and ages experience a sense of belonging 

COMMUNITY REIM

https://www.winthrop.edu/coe/winthroplife/

https://www.clemson.edu/education/programs/programs/culife

Summer Fun!

Wow! What a GREAT start to the summer! We have instituted several new programs this summer and have served 134 members of our community in new and exciting ways - and we're only halfway through the summer! Read below to see all about our new programs:

Mosaics at Miracle: Participants came 4 weeks in a row to make different themed mosaic creations based on different themes. We had 9 participants each week. They enjoyed making mosaics of animals, beach scenes, Christmas scenes, and one week of free choice mosaics.

Dig and Discover: Eleven participants came to the park to dig and find raw rocks and minerals and then have them tumbled and polished to discover new treasures! They got to make and crack geodes, and dig for dinosaur fossils!

Fun Fridays: A new program for older teens and adults had 22 participants playing bingo in June! For July the plan is to do Music Bingo, and in August, they will have Trivia!

Salad Day with Miracle Park partners Growing Joy: We got together to sing and enjoy some freshly harvested aquaponic lettuce grown fresh by some of our favorite friends in the TR program when they went on a field trip to Growing Joy Farm! A good time was had by all, even in the rain!

Tea Time! 22 participants came to High Tea at the park. What a fancy, fun time complete with fancy table cloths, tea, finger foods, fancy hats, and, of course, teddy bears!

Sensory-Friendly Playtime: Perhaps our most needed and most popular new program so far! We had 52 participants at these two sessions! Miracle Park is for ALL, and we like to include everyone, but sometimes inclusion can look differently! In order to include some of our friends, we need to create protected spaces for them. Often times our beloved park is so crowded that it is too overstimulating for some of our friends, so we decided to close the playground for two short periods in order to give them the space they need to be able to enjoy our facilities. Our community was GREAT about this! While we did advertise on our sign and social media, inevitably, some people came to play and did not know that the playground area of the park was closed to the public. These families respected the need for some friends to need a smaller setting to enjoy the playground. THIS is inclusion!  

Stay tuned for an update at the end of summer on other new programs!

Thanks for supporting Miracle Park! If you'd like to donate to help aid our expansion and continued commitment to creating a place for EVERYONE to BELONG - donate on our website: miracleparkrockhill.com

Seeking Guardianship for an Individual with Disabilities

My husband was a fierce and tireless advocate for people with disabilities. A former middle-

school journalism and English teacher, his life’s trajectory changed when daughter Hannah was

born in 1976 with Down Syndrome. He began employment with Easter Seals Colorado, and

later became the executive director at the ARC of Jefferson County, Colorado. Among other

things, he promoted a “least restrictive environment” model for people with developmental

disabilities where the individual, with advice from loved ones and advocates, could make their

own life decisions. This model carried over to our daughter, adopted from China at age 7, when

we realized that she, too, had significant developmental disabilities.

Before she turned 18, we had healthcare and financial powers of attorney documents drafted

as a safety net. We avoided full guardianship out of respect for the “least restrictive

environment” model. This worked well, until behavioral health issues began to impair her

ability to remain safe. She became impulsive, defiant, and belligerent. She demonstrated to us

in clear fashion that she was not capable of making safe decisions. Her mental health and her

cognitive and intellectual disabilities were on a collision course that would take her down a very

dangerous path if left to her own devices.

Now in her twenties, my husband and I mulled over the next steps. Tragically, he died

unexpectedly in October 2021. Our world turned upside down, and for our fragile daughter it

was full blown chaos. Through the grief and aftermath of an untimely death, the surviving

children and I thought it was time to seek full guardianship for her and we all felt that dad

would agree. I made the call to our family attorney.

I learned that guardianship is not granted based on fears of what may happen. It must be

demonstrated that she is an incapacitated adult. This following excerpt was taken from the

sccourts.org website:

In South Carolina, an incapacitated person is someone who is impaired due to mental

illness, developmental disability, physical illness or disability, advanced age, chronic use

of drugs or alcohol, or other causes. Just because an individual makes bad decisions or

has a disability does not necessarily mean that he or she is an incapacitated person. See

S.C. Code Ann. § 62-5-101 at http://scstatehouse.gov/code/t62c005.php.

It goes on further to differentiate between an incapacitated person and one with poor

judgement:

An incapacitated person is unable to make responsible decisions about his or her well-

being. A person with poor judgment has the ability to make responsible decisions but

chooses not to do so. Sometimes it may be difficult to understand the reasons for the

poor decisions, which is why the Probate Court relies on the opinions of medical

examiners.

Based on these definitions, I am currently seeking guardianship for her now. I started the

process not long after my husband’s passing, only to table it when our daughter’s mental health

appeared to improve. This was short lived, and the process of seeking guardianship is in active

stages at this time. Letters are being sent by the court to her siblings (to assure the court that

they are knowledgeable, and in case anyone wants to contest the petition) as we prepare for

medical and psychological examinations mandated by the court. She is safe in a “host home”

about an hour from me. The following are questions I had to answer for the guardianship

petition… do I believe she should retain the legal rights for any of the following:

1. Make end-of-life decisions

2. Participate in social and religious activities

3. Vote

4. Consent to or refuse educational services

5. Contract for marriage

6. File for divorce

7. Travel independently

8. Be employed without the consent of a guardian

9. Operate a vehicle

Each element was carefully considered as to what the minimum restrictions would be in order to keep

her safe yet give her the autonomy to make some major decisions in her life. As the retired one in our

family, my husband was at the helm of our daughter’s life-planning activities while I maintained my full-

time job. Since his passing, I’ve been on a crash course of educating myself about programs, systems,

resources and social security. As your loved one with a disability is growing toward adulthood, think

about how to approach this process for them, and for you. It is not a “one size fits all” solution, and not

all those with disabilities will need full guardianship. There are pages of state-specific guardianship

information on the web. Do your homework. Speak to others who have walked through the process and

come to a decision that best fits the needs of your loved one. The process of life planning and

guardianship should be easily and readily available to all impacted families. 

Written and submitted by Paula Lowther.

Paula is a nurse practitioner with more than 30 years experience in the field, including camp nursing for adults and children with disabilities She is currently expanding her resume to include content writing for the healthcare industry. She has 2 young adult daughters, and is the bonus mom for her husband, Todd’s 3 adult children. She resides in Fort Mill with her menagerie of dogs, cats and birds.

What are Invisible Disablilities?

 

Have you ever heard the term "invisible disability"? Or have you ever come to a Miracle League game and thought: "That athlete looks just like me. I don't see a disability"? Or maybe you've tried to have a conversation with someone who didn't appear to have a disability, only to find that conversation really difficult.... Not all disabilities can be seen. The Invisible Disabilities Association defines the term like this: "an invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings, false perceptions, and judgements."

Many disabilities such as learning and attention issues, some physical issues, neurodiversity, mental illnesses, and other disabilities are not apparent when seeing a person for the first time. This can lead to making assumptions about the person's abilities and put both parties in difficult and unfortunate circumstances. I talked with some of our athlete's moms about their experiences. All three moms that I interviewed share very similar stories. 

Jahan's mom said: "I am so happy that you are doing an article about invisible disabilities! I've been stressing over this for many years now. When Jahan was younger, around 3-6, I always had to make myself tell parents at the playgrounds what his age was because he didn't 'act normal' for his age. I feel that it is harder for children and adults who have an invisible disability because they are expected to behave a certain way. I've cried a few times when children ignore Jahan or are mean to him because he didn't know how to start conversations, or he just starts playing with the children and they run away from him. It is hard with other parents as well. Jahan would play with their children, who would be younger at the time, and the parents would ask how old he was, with a 'shouldn't he be playing with children his age' look. 

Even as I am a strong advocate for invisible disabilities, Jahan does and doesn't get the accommodations he needs; it depends on where we go. I don't know where or how to get accommodations if we go to certain amusement parks, as he doesn't like crowds. Some difficult things we encounter are stares and people saying that nothing is wrong with him - make him behave, or he'll grow out of it. It's also difficult as I have younger children who look up to Jahan because he is the oldest, and they tend to copy him in ways I have to tell them not to, which adds more stress. Having him is a blessing, though, because it has changed me drastically as a mother. Miracle Park has been a blessing to our family to have a place where he can blend in and be accepted."

Ben's mom said: "Ben has Autism; we didn’t want that to rule our world. So often in society, you become 'the family of the kid with autism, or the family of the kid in a wheelchair'- then you’re not a family, you become the disability. The fact that Ben's disability is somewhat invisible meant that we had a choice in that, but it wasn't really a conscious decision, we just never wanted him to feel unaccepted. Every family handles diagnosis differently… for us, it was survival mode… we just wanted him to be  “I’m Ben…. Not I'm Ben with Autism,” so he knows now that he has Autism, but he doesn’t lead with that. We never said 'there’s something wrong with you.' When he asked questions, we said you were just born differently. It’s most often pointed out for other people’s benefit, so they know how to interact with him. If he says something about someone else's disability, I might say 'he or she was born differently like you were.'

People, even family members, often tell us: I’m afraid of Ben, not afraid that he is

going to hurt me, but will I hurt him, am I going to do something wrong? They are unsure of how to interact with him. Since he has some developmental delays and is neurodivergent, we've had times in the past on playgrounds where people would approach him as a typically developing child and not understand how to continue when they realized something was different. His sister and I have stepped in to say that he has autism, or to tell people how to talk to and play with him. 

Now that he is older, it looks very different. Some of his freedoms have had to be been reigned in; he’s 26 year old man, but loves My Little Pony. So where he used to be able to shop by himself at Target, now I feel that I have to be near him because of people's perceptions: 'Why is there a man in the My Little Pony aisle talking to my 4 year old daughter?'  Society fears for her safety, but I fear for his. His intentions are pure and innocent, but they don't know that, so I have to be close by to intervene, explain, and help with conversations.

Not making our lives revolve around autism has been good and bad; it's often difficult for sibling relationships. His sister has had to make compromises and sacrifices and has been a second care giver. She loves Ben and would do anything for him, but it has had an impact on her childhood as well.

On the bright side, Ben has been involved with PRT since he was 8! This is a community where he feels safe. Miracle League is somewhere Ben can go and people don’t look at him weird. He’s encouraging and kind to others at ML- wants to get better at sport for his coaches.

Elijah's mom: Elijah is 17 and on the spectrum, and he knows that he is different, but he doesn't look different and doesn't understand. He wants to have a job like his older sisters, but it has been difficult to find employment. He loves people and wants to have friends his age but has a hard time carrying on a conversation. He is beginning to notice girls, so I fear for what challenges that will bring. He likes to navigate the mall and food court by himself, but sometimes I have to step in to explain. He gets stared at and asked not to loiter in places where he really isn't loitering, just doesn't know how to have a conversation or ask for what he needs, but he doesn't really want Mom to help either. It can be very challenging, and it makes me sad sometimes, but Elijah is my joy. He is a silver lining in my life, and I wouldn't change who he is, even if I could. I would change other people's perceptions and understanding of him. I want people to know that he has feelings just like you even though he cannot express them the same way. He wants friendships and to be included. We are thankful for the relationships he has built through Miracle Park and Miracle League.

Thank you to all the moms who so bravely shared their stories. As a community, we have a responsibility to try to understand others and help everyone feel included. Our goal at Miracle Park is to remove barriers and be a place where EVERYONE can BELONG. We can do that by extending understanding and kindness to all. Read below for additional ways to include those with invisible disabilities.