A Parent’s Perspective: Housing
By Claudia Pringles
Claudia Pringles is an attorney with a focus area in special needs law. She is an active volunteer and has a passion for advocating for individuals with developmental disabilities. She is a Co-Chair of the Vermont Autism Task Force, a board member of the Vermont Center for Independent Living (VCIL) and a council member of the Vermont Statewide Independent Living Council. Ms. Pringles and her family live in Montpelier, Vermont. She is the proud parent of two daughters, including a daughter on the autism spectrum.
In this interview, she shares her family’s experience with choosing a suitable living arrangement for her daughter and offers tips to other parents who are interested in exploring housing options.
- At what point did you start thinking about housing options for your child?
My practice area is in special needs planning and helping clients plan for the future is what I do every day. I find that many of my clients struggle with the housing issue in particular and I’ve heard the same from friends who are parents of adult children with disabilities. I began thinking about the housing issue for my own daughter, Katarina, when she was about ten years old. She is now 14.
- What types of things did you take into consideration when looking at the different options?
My daughter’s own home: A typical housing arrangement in my state (Vermont) is for a developmentally disabled adult to live with a foster family in the foster family’s home. A main caregiver would receive payment for their services from the state and also be able to collect rent from the disabled person. For us, it was more important for our daughter to live in her own home and have caregivers come and live with her, even if it would mean a periodic change in staffing.
Personal safety and privacy: The home itself will be managed by a trustee who will make decisions regarding the home in the best interest of both of my daughters, including some discretion on who will live in the home. If she were in someone else’s home, we would have no control over who would come and go or whether my daughter’s privacy would be respected, nor would be able to do a spontaneous wellness check. This is particularly important for us because my daughter has limited communication.
Sustainability: We also wanted to make sure her living situation was financially as self-sustainable as possible. We purchased and now live in a home with a separate apartment on the second floor. Once my husband and I have passed on, my daughter and a caregiver could live on the bottom floor and the top floor could be rented for income. Based on the current rental rates, we believe the rent would cover at least 80% of the mortgage payment every month. If my daughter stayed with a foster family, she would be expected to a substantial amount of her SSI check on rent. By staying in our home and renting the second floor, it will be less expensive for her and leave her with more discretionary spending. The house is also in a small city with an extremely low vacancy rate.
Also, the caregivers coming to our home to assist our daughter would be paid by the state (based on the system of care plan we currently have in the state).
Independence. Our daughter’s independence is also very important. Our home is within walking distance of downtown where there are shops, cafes, restaurants, grocery stores, drug stores, etc. A bus stop is also nearby.
Personal Interests: Although my daughter’s limited communication and young age makes it difficult for us to know what her preferences for housing would be, we know that she loves going downtown and loves to be around people. We do recognize that her interests could change or that she may decide to choose a different lifestyle or other location.
- How did you arrive at your final decision?
I did a lot of research on different housing models and came up with a way that my daughter could have her needs met and be self-sustainable. When we were looking for a new home for the family, we decided to look for a multifamily home with the intention that our disabled daughter would have her own home in the future. It took us a few years to find the right home. We are living in the home now as a family and using the apartment on the second floor as additional living space and as office space for me.
- What are some lessons learned along the way?
I learned that we had to make some other sacrifices in order to plan for my daughter’s future. Our choices for a new home for our family were very limited because we needed a multi-family house, in good condition, at the right location and at the right price. We are very happy with our decision as it has given us much peace of mind, even though I didn’t get the large walk-in closet I wanted.
- What suggestions would you have for other parents who are considering future living arrangements for their child?
- Talk to your child about what he or she wants and be respectful of their wishes. If you are unable to ascertain what your child would want, do your best to make the decision for them. Base your decision on what you know about their likes and dislikes and what would be less disruptive for them.
- Don’t limit yourself to the models that currently exist in your state, but begin to think creatively about different models. Talk to other parents and professionals, including people from other states.
- Make sure that a system exists to provide for a support person or caregiver for your child, if needed.
- Realize that your plan may be a backup plan as your child may choose another living arrangement.
- Don’t wait or put this decision off, but begin thinking and researching now. The earlier you start, the more choices you will have and the more peace of mind it will bring.
- What resources did you find helpful?
The most helpful was to talk to other parents and to knowledgeable professionals who were willing to think outside of the box.
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Very helpful article…. Thank you! I appreciate your sharing your thought process and the resulting decisions and action. This provides an excellent model for families who have members who are vulnerable. You balanced what’s important TO your daughter (proximity to her interests) and FOR her (health and safety), which is a truly loving art.