Our Story

Elena was 13-months old when doctors told us she wasn’t meeting her milestones nor developing correctly.  We were working at the American Consulate in Shanghai, China at the time.  Overnight, our lives changed: an emergency medical evacuation and relocation back to the US; countless doctors, medical tests, and early intervention services.  A few years later we received a formal diagnosis – Angelman Syndrome, a rare, neuro-genetic disorder that causes global development delays, sensory processing disorder, eliminates speech, and often causes seizures and mobility issues.  (www.cureAngelman.org)

The diagnosis hit me really hard.  Before the diagnosis I kept telling myself Elena was going to “catch up”, even though every day, and every missed milestone, separated her further from her peers.  After the diagnosis I went into survival mode – doing everything I could to get through the day and heal my kid.  Our lives revolved around therapy appointments, special education, and trying to create a new life that didn’t include most of the goals and dreams I’d always wanted.  Returning to life overseas wasn’t an option for me due to Elena’s unique educational and medical requirements.  My life shrank to special needs childcare and mourning all I thought I’d lost.

Thankfully, just like Elena’s development, my growth happened slowly, and differently than I’d envisioned.  I grew into this “new normal”. And I recognized that, like the classic poem, Welcome to Holland, this life we were living wasn’t awful and horrible – it was just different.  Challenging, frustrating, overwhelming at times, but not impossible.  And not without its moments of joy, peace, and beauty.

Acceptance and gratitude grew – small glimpses of possibility blooming like beautiful flowers amidst the weeds of grief, despair and overwhelm.  Over time the flowers outnumbered the weeds.

Early Intervention therapies morphed into public school special education then into a customized homeschooling program when I realized I could create an individualized educational and therapeutic program for Elena that served her best.  I used the attendant care hours provided under the CCC+ (formerly EDCD) waiver to hire a former preschool teacher to create and manage Elena’s program.  Speech Therapy and Occupational Therapy (OT) were provided in weekly therapy sessions with “homework” from the sessions woven into each day.

Elena was thriving, communicating in one- and two-word sentences which a previous (well-meaning, but not omnipotent) medical doctor had told me wasn’t possible.  (His exact words were that “you should consider it a success if Elena learns to indicate “yes” and “no” in her lifetime.”)  I’m so grateful I didn’t accept his limited vision for Elena and that I presumed competence.  Elena has shown us she’s capable of incredible feats – but only because I gave her the time and resources to develop them.

Elena was blossoming.  And so was I.  Despite a divorce, being a busy, single mom to two, and returning to the workforce full-time, I thought I had it all together. I was back to writing for enjoyment, I expanded my photography hobby from baby pictures to flowers and nature, and I even went to a few weekend retreats for mothers of children with special needs where I met “my tribe” of fierce, wonderful women.

As Elena approached 18 those weeds of fear, overwhelm, and despair started to take hold again when I realized that I didn’t just need to take care of Elena for the rest of my life.  I was already doing that very well. I needed to take care of Elena for the rest of her life. 

And I had no idea how I was going to do that.  

I jumped into creative research mode.  Just like with our homeschooling journey I envisioned the life I thought would work best for Elena and our family, then I researched what others had done, what support options were available (especially financial), and how I could create a sustainable structure for Elena that would ensure she was well cared for the rest of her life.

First, I got guardianship in place with the help of an attorney versed in the requirements of lifelong care for someone with a disability.  With limited immediate family, and no one who would step into the role of “live-in mom” when I was no longer physically capable of living with Elena, I knew I would eventually need to outsource some tasks to a private, paid case worker or other professional.  We already had a special needs trust in place, but I doubted that would pay for everything, especially since while her diagnosis limits her ability to live independently, it should not limit her lifespan. 

I assumed I had time to figure all this out.

Then I had a minor health scare. 18-hours in the hospital, away from Elena, showed that my plan for Elena had a “single point of failure” – which was me – and therefore was not sustainable. I needed to find more support for Elena and identify additional people who could step in as needed. 

Then our amazing nanny/homeschool teacher of ten years retired.  It took me 5 months to find a replacement.  Not because I wasn’t looking, not because people didn’t want to work, not because Elena or I were difficult to work with, but because the financial compensation provided by the CCC+ waiver – $17.97 an hour with no benefits – understandably was not adequate for most people. 

I wanted Elena to stay in my house with me.  But I couldn’t continue to provide the care she needed without more paid support.

I requested the Developmental Disability (DD) Community Living Waiver.  Reluctantly, I started researching group homes, thinking that was our only option.

But the more I researched, the more I despaired.  

I knew Elena flourished in a familiar environment, supported by reliable, consistent trustworthy people.  It took her months to get accustomed to new people – and longer for them to learn how to interpret her subtle communication cues – so wherever she lived, staff turnover had to be low.

Her daily schedule needs to be structured to accommodate her needs and her desires.  But it also needs to be flexible to adapt to her ever-changing medical and sensory requirements.  

Medically, she needs to follow her strict, allergy-safe, ketogenic diet (for seizure control).  Allergies also mean she can’t be around chemical fragrances and perfumes, commercial cleaning products (like bleach), and even carpeting.  

To keep her safe, she needs only female caregivers and roommates. 

Elena needs constant access to her Alternative Communication (AAC) device (her “talker”), but she also needs facilitation help using it.  That means those caring for her need to become fluent in this new, foreign, AAC language. 

She needs to see her therapists weekly and receive frequent medical support.  

And she needs to have fun.  And fun for Elena is different than fun for many other people.  Fun for Elena means: trips to farms and zoos; interactions with other people, especially babies and toddlers; hanging out at the mall; listening to music on car rides; petting dogs; being able to pull back and recharge when she is overloaded; and some days it means hours and hours of sensory play, such as water play, or playing in our indoor sandbox.

The list of what would help Elena live her best life went on and on.  And I couldn’t imagine someone who didn’t love Elena, who was only paid to care for Elena, who had a schedule to keep and other people they needed to care for, being able to accommodate her special needs and wishes.  

Mostly I worried they wouldn’t be able to keep her safe.  

I’d heard horror stories about group homes.  I’d heard of residents who wandered away from the home and weren’t discovered missing for hours.  I’d heard of abuse – verbal, physical, sexual, emotional.  I’d heard sad stories of those neglected, forgotten, or ignored. 

While I know there are some good, safe, compassionate group homes that work for many people, the idea of putting Elena in the care of other people who don’t love her like I do, and may not be competent, careful, or safe, terrified me. 

Staying with me, in our home, remains the best option for Elena.  Even the best group home can never provide the same level of care for her that I can.  Our home is Elena-focused – and she thrives in it.

And it fills me with peace knowing she is safe, loved and cared for while with me.

But I couldn’t continue to provide that care with only limited, sporadic support – not without jeopardizing my own health and my longevity.

I didn’t know how I was going to figure this out.

Then another mom told me about Sponsored Residential. 

Under Virginia’s Sponsored Residential program, using Elena’s Community Living Waiver, I (the Sponsor) receive funds to create an individual group home for Elena (the individual) in our home.  I can use these funds however needed to provide care and support for her.  I can:

• Recruit and retain qualified staff by paying a competitive wage and providing benefits, such as medical insurance and vacation pay
• Pay myself or a family member to care for Elena 
• Pay housing costs – mortgage, utilities, or whatever is needed to maintain the home
• Pay for an existing day program – or use the funds to create my own day program with outings and activities for Elena
• Pay for therapies, medical care, medications and supplements
• Pay for food
• Pay for anything else needed to care for Elena 

Elena’s SSI Disability benefits continue as well.

Virginia’s Sponsored Residential Program allows for 1-2 individuals with disabilities to be housed in the home.  So, for families with 2 loved ones with disabilities, it’s possible to remain together in the home.  For those with just one individual (like Elena), if we want, we can invite in a second roommate with a disability with their Community Living Waiver funds being paid to the Sponsor to provide the care and resources the second individual needs. 

It’s exactly what we need for Elena to stay with me, in our house, with adequate paid support. 

I was ready to jump into the program but was warned about the extra paperwork and requirements I’d need to complete to qualify.  Just like a non-family-run group home, Sponsored Residential Sponsors need to comply with government regulations.  This includes: 

• Housing approval
  • For our house that included: adding fire extinguishers and additional smoke detectors; buying a locking cabinet for medication, supplements, knives, and some cleaning products; providing documentation; installing a lock on Elena’s bedroom door; lowering the hot water heater to 110 – 120 degrees; adding a landline telephone for 911 emergency phone calls; and having 3-days’ worth of food and water on hand in case of emergencies.  
  • Note: Home ownership is not a requirement for the Sponsored Residential program.  Rental properties can be used as long as you can make the improvements required for the home to qualify
• Caregiver Approval for every adult in the home and every paid caregiver
  • Full background checks
  • Tuberculosis (TB) testing
  • Letters of Recommendation
  • Proof of High School (or higher) education
  • DMV Driving history (for anyone driving the individual) 
• Sponsors (the parent) also must provide:
  • A budget estimate
  • Proof of financial resources for 3 months (based on the budget) 
  • Floor plan and fire evacuation plans for your home
  • Insurance:
    • Auto
    • Homeowner’s
    • $1M Umbrella policy
• Training Requirements for every caregiver
  • CPR and First Aid Training
  • Medication (MAT) Training – 32-hour course (required for anyone giving the individual medication or supplements)
  • Safety and Behavior Training
  • Agency training (provided by our agency, or whichever agency you register with) 
• Extra Tasks
  • Daily Progress notes (there are online apps that make this easier) 
  • Monthly visits from the agency 
  • Monthly fire evacuation drills, and checking of smoke detectors and supplies
  • Notifying the agency and CSB for any safety or medical incidents, and sharing full details

Even with my background in government regulations, preparing everything for compliance with the program was challenging.  Some of these activities are things that I, as Elena’s mom, never thought I’d need to do.  But, in my mind, if I can keep Elena with me, and get the additional support I need to do that, it’s worth it.