APH CareerConnect Advisor and friend of APH FamilyConnect, Lisa Lloyd, and her husband have a 14-year-old who is blind whom they adopted from India just before her 5th birthday. If you know Lisa and her husband, you know they are fierce advocates for the truly unique needs of their children.
Lisa shares, “Our daughter is in the low incidence categories of blind students and internationally adopted students.” Consequently, they choose to pursue additional private services outside of the school system. Specialized services and assistive technologies can be expensive; Lisa generously shares the creative funding solutions they have pursued.
The following is an overview of services the Lloyd-Shattock family has obtained for their teenager who is blind.
- Lisa and her husband utilize the services of a professional children’s advocate, Carlton Ann Cook Walker (BEAR (Blindness Education and Advocacy Resources), and an educational lawyer, (Christian Knox of Ruderman and Knox in Sacramento, CA), who specialize in cases of individuals who are blind or low vision. Lisa shares, “It is really important to understand your child’s rights, but also that most educational professionals have never come across a blind or low vision student before and this is further complicated by a child having additional special needs…We use our children’s advocate to help us educate them and ourselves.”
- They have hired a private assistive technology specialist, Katie Phan of Alameda, CA, who helps their daughter learn the BrailleNote Touch, Voiceover, and JAWS. Katie is blind herself with 30+ years of experience reading braille. Lisa shares, “She knows the technology inside and out because she has to use it every day for her ordinary life tasks. This is a very different experience than having a sighted employee of a school, or a company, instruct your child.”
- They have hired an Indian peer math tutor who they taught how to work with their daughter on the abacus and the talking calculator. The tutor creates word problems with their daughter’s top interests in mind (guide dogs, Bruno Mars, typical South Asian food: dosas, idlies, sambar, etc.).
- They have discovered free distance learning peer tutoring which they use for spelling through Spec Create in San Jose. They have their daughter type up her own word lists on the Perkins Brailler, take a picture of the list(s) and send them to the tutor over their phones so she can review them with their child. The word lists might be the names of various countries, holiday celebrations, days of the week, or months of the year – whatever their daughter is struggling with or covering that week in school.
- They have hired a private occupational therapist who comes to their home once per week. They work on daily home-based tasks their daughter is struggling with.
- They have hired a private speech therapist who is Indian, a neighbor they met through Nextdoor.org that comes to their home weekly and charges an affordable cash rate.
- They have identified a braille mentor to work with their daughter on the reading of braille and practicing her braille contractions whom they have offered a stipend.
Lisa shares the following resources they have utilized for financial support:
Lisa shares, “Our daughter has both medical insurance and my husband’s health insurance plan, and that can help get those medical bills down.”
In-Home Support Services (IHSS) through a local regional center
Lisa shares, “I tried to go to work outside of the family home but struggled to maintain even a 20-hour part- time job on top of both of our children’s and household needs. We then applied/qualified for IHSS and were relieved to receive six months of back pay. I can provide services to my daughter, or hire someone else to do so. I can better meet the needs of our daughter myself. Our family receives approximately $2,000 per month which we put right back into the cost of our daughter’s private services!”
CalABLE, or other government-approved savings program for people with disabilities
A person with a disability can save up to $100,000 without it affecting their benefits, and they can elect an investment strategy that they are comfortable with in order to grow these funds. Lisa shares, “When our daughter is ready, she can request a debit card from this account and she can use these funds for her daily living expenses. Also, family and friends can give financial gifts to her for Christmas and birthdays instead of always asking, ‘What does she need?’”
Hosting international students
Lisa’s family has hosted students almost solidly for the past seven years through the International Student Placement office in Los Altos, CA. Lisa states, “These students pay a room and board fee that we have used in the past to pay for our daughters’ many private support services. During Covid we decided to rent out the extra bedroom to an elementary school teacher-friend since there were very few international students incoming.”
Lisa shares, “We identified a proficient braille reader who is a student at the California School for the Blind who has been helping our daughter these past 6-8 months mostly for the work experience. We have offered her a stipend (which she won’t take) so we sourced a treadmill for her on Nextdoor.org and bought her a nice pair of earrings for Christmas. We still hope she will change her mind as it’s important for young women who are blind to begin to see themselves as income earners.
We also have a friend who is blind and a JAWS-user helping our daughter on Sundays; he volunteers his time helping her (and us!) learn JAWS. We had our daughter braille him a thank you note, and we sent his whole family a box of Christmas presents this past year. You can also provide the volunteer tutor with a letter of recommendation if they would like.”
Lisa states, “We obtained our daughter’s brand-new laptop (for JAWS) by posting on Nextdoor.org that she needed one and someone who lives close by that we didn’t know drove over and dropped a brand new one to us within two hours of me putting up the post! This neighbor checks in from time to time to see how she’s doing. Another neighbor who is blind read our post and gave our daughter braille stickers for the keyboard the very next day! It turns out that he teaches coding part-time at California School for the Blind!”
Build your network of support
We hope these suggestions help you seek out creative solutions for funding as you advocate for your child who is blind or low vision.
In the words of Lisa Lloyd, “I think our job as parents of a child who is blind (and has other special needs) is to keep opening doors for her until she can learn to open them for herself. I often think about all the amazing people who are a part of our lives because of adopting our daughter! That’s pretty special. We have worked hard to build a network of support but it has been an incredible journey of discovery, not just for us, but also for many others on her team.”
When seeking services for your child who is blind or low vision, you can utilize the Directory of Services which lists schools, agencies, organizations, and programs in in the governmental and private, nonprofit sectors that provide a wide variety of services, information, and other assistance to blind and visually vision children and adults, their families, and professionals who work with them. Many of the services are at no or low cost to individuals.