A COVID Reality Check: 10 Practical Ways to Plan from Home for the Future of a Loved One with Autism or Other Intellectual/Developmental Disability

“What happens if I get COVID-19? Who would care for my son at home? What if I gave it to my autistic daughter?” The fragility of our everyday lives has been exposed as we all work together to stay safe from the Coronavirus. The reality is that on top of grieving, some adults with autism or other intellectual/developmental disabilities have lost a parent, primary caregiver and/or their home due to COVID-19. 

At Madison House Autism Foundation, we encourage people to ask the hard questions. Not just to face their fears, but to imagine how life could be even more meaningful when their adult child has a chance to live their purpose. We strive to provide inspiration through our mini-documentary success stories, the vast examples on the Autism Housing Network, and offer practical guidance to ensure people find a home that affirms their self-worth with the right mix of support and services. 

As we are all spending much more time on the couch, it seems appropriate to offer our Top 10 Things to Do to begin preparing for the time when your loved one will fly from the nest and into their bright future. Even better for your loved one if you have planned and they were not upended by the storms of life!

  1. Virtually explore future residential options: There is no “best” option for people with neurodiversities because every person is so different. They have different personalities, lifestyles, support needs, service delivery preferences, biorhythms, etc. Some people thrive on structure and routine, others feel confined by it. Some love the buzz of city life, others feel enormous anxiety without space to walk freely and not risk running into someone. This AHN article explains how people with different financial means may plan for housing. In our AHN Virtual Tour of Housing and Support Models video series, we offer over 18 examples of the ‘benefits’ and ‘considerations’ of different models. 
  2. Explore how smart home and other assistive technology is helping people live more independently: A lot of people with autism or intellectual/developmental disabilities do not need someone in their home watching them 24/7, but could benefit from some extra security or safety nets to ensure they are safe and comfortable. Technology has come a long way and will be key in the future to mitigating our caregiver crisis. You can explore tools in the AHN Resource Directory, but we also love these videos from TN’s Enabling Technology Program!
  3. Consider creating a [Name] Life’s Vision slideshow: This should be fun and exciting to create! Use pictures and let your loved one lead the way as much as possible. Do you want to live by yourself? What type of job do you want? What hobbies do you want to continue or explore? What type of house? Romantic partner? What would be the plan for your favorite day? It is a perfect launchpad to invite people to join a person-centered planning team!
  4. Create a 1-page profile that highlights strengths and support needs of someone with neurodiversity: This AHN article provides a 1-page quick guide that is beneficial in telling someone about what makes a person unique, how they communicate and ways in which they can best be supported. We created a template for you to make it as easy as possible to create this handy tool. 
  5. Set up and invite family, friends and support persons to an introductory online person-centered planning event (or happy hour): You and your loved one would share their Life Vision and how the people on this call are closest to them. You don’t have to have all the answers, but explain you hope they will join you on the road to make these dreams a reality. This doesn’t have to be a formal meeting, but it lays the foundation for developing a robust person-centered plan. Learn more about Person-Centered Planning in this AHN article or search for your preferred Person-Centered Planning guide in the AHN Resource Directory. You can use Google Hangouts for free to set up an online event. 
  6. Consider opening an ABLE account as an easy way to start saving: The National ABLE Resource Center has lots of webinars to learn details on ABLE accounts or check out this short AHN article about how it helped Daniel save for a truck without losing public benefits (*update- he got his truck!). In a nutshell, they are tax-advantaged and similar to 529 College Savings Accounts. The balance of these accounts do not impact eligibility of means tested programs like SSI, Medicaid or SNAP. It’s EASY to set up online, and you can start your tax-advantaged savings right away!
  7. See if there is a program near you to start an Individual Development Account (IDA): An IDA is a magical tool to help you not only save, but have your savings matched by the sponsor agency. That’s right, if the low-income account holder saves $500, it turns into $1000! Now every program is a bit different and often requires attending a helpful financial counseling class, so check out this map to identify the specifics of the IDA program near you.
  8. Make sure you are on a waitlist for a Medicaid waiver that could provide residential supports: Every state has different “waivers” that waive one’s entitlement funding to institutional care in order to receive long-term support services in the community they live. The state can set up 1 waiver or 20 waivers, so it’s important you understand what waivers are available and which ones for which you are eligible. Some states have waivers that do not have residential supports as part of the services within that waiver and you would need a different waiver to access residential services. Thus, find your state Developmental Disability agency and HCBS waiver webpage and make sure you know you are on the right waiver or waitlist to access residential services. 
  9. Check if you can get on a waitlist for a Housing Choice Voucher: A Housing Choice Voucher is a permanent rental subsidy. Thus, for people who are extremely low-income who are able to access a voucher, they would only need to pay 30% of their income to rent and the voucher subsidizes the rest. It is not easy to get a voucher as they are limited and in some places you cannot even get on a waitlist. You apply for these vouchers at your Public Housing Authority (PHA) and can use this website to see if your PHA has an open waitlist. You can also apply for vouchers in other PHAs too!
  10.  Create a What Matters Most document: This is a document that highlights the most imperative details for quality of life. If you only had 5 minutes to live and you needed to convey the most impactful details of one’s life (albeit assuming that legal and financial stuff has already been documented and shared), what would you make sure you shared with future caregivers? For example, he needs to put his socks on before putting on his shirt, she needs to have a spoon in all her drinks, he needs to be given a 10-minute heads up before transitioning to another activity, she despises ketchup, he needs to take his meds with chocolate pudding and sometimes will tolerate applesauce, she needs to be watching an episode of Friends to fall asleep at night, etc. These are details that can make or break the quality of one’s life. These things are worth writing down, sharing with all paid and unpaid supports, and placing in a binder as the beginning of one’s Person-centered plan.

Phew! That was a long list, but if you take it one day at a time- you can get through it and be better prepared for the future. What better time than now? COVID-19 has caused us to contemplate and question how we might respond better to a crisis in the future. It can give you peace of mind moving forward. When you catch your breath again, you can consider asking these Top 10 Questions for Adulthood written by Mom and fierce advocate of Liam, Mari-Anne Kehler.

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