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

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.