As I sat listening to the experiences of special needs parents as part of a panel discussion offering resources, I recalled the parable of Jesus:
He said, “In a certain city there was a judge who neither feared God nor had respect for people. In that city there was a widow who kept coming to him and saying, ‘Grant me justice against my opponent.’ For a while he refused; but later he said to himself, ‘Though I have no fear of God and no respect for anyone, yet because this widow keeps bothering me, I will grant her justice, so that she may not wear me out by continually coming.'” And the Lord said, “Listen to what the unjust judge says. And will not God grant justice to his chosen ones who cry to him day and night? Will he delay long in helping them?
(Luke 18:2-7 NRS)
The widow in Jesus’ story was the advocate who would not give up. She returned again and again, asking for what she needed until she received it. How often do we do that as parents? Pretty much continually with insurance, school accommodations, state and federal agencies, and more. I looked out from the panel table at a gathering of earnest advocates seeking advice of how to best advocate for the needs of their children. They received sage advice from Denise Briley of Thru the Roof Ministry at Houston First Baptist Church. She successfully navigated the waters of receiving services for her medically fragile son. Here are some of her insights:
Be persistent! As a family who was an early pioneer in keeping home a medically fragile child rather than institutionalizing, the Brileys fell through the cracks of programs that should have provided support. When denied by an agency she told the person on the other end of the phone, “I just want you to know I am going to call you every day at 1:00. I look forward to talking to you again tomorrow.” And she did. Every day. For 59 days. On day 60 her phone rang at 12:59, “Mrs. Briley, I have some wonderful news…”
Be prepared! Do the research. Ask questions. Document everything. If there is more than one local agency office that could provide services, find out which office is the most compassionate and helpful. Show up in person with your child. Denise shared a marvelous story about taking her son to the local agency office and then on to the main office in our state capital. “Oh Mrs. Briley, you didn’t need to bring your son.” “Well, as a matter of fact I did because I have no respite help to care for him and he clearly cannot be left alone.” Her burgeoning bag with medical equipment was an ample testament to his needs, with every machine that beeps set to max volume. Seeing, and hearing, is believing! “Mrs. Briley, clearly there has been a mistake in the respite decision…”
Be patient! It takes time. Prepare to hear ‘no’ many times. If a cover letter was missing, submit again. If a box wasn’t checked, check it and re-submit. Eventually there may be a ‘yes.’ And, while patiently working through the system for a ‘yes’, don’t feel like you have to pretend that you have it all together. Obviously, don’t berate the person who is there to help you. But if it is a rough day don’t feel the need to hide your discouragement, tears, and anxiety. Policies often have grey areas of interpretation and real people with real emotions interpret those policies. Let them see that you are human because they are too and it could help build a bridge to the services you need for your child.
Jesus’ parable is of an unjust judge. The good news is that our God is not an unjust God, but rather a God who hears our prayers and has sent The Advocate on our behalf. Jesus told his disciples in his final evening gathered with them in the upper room:
I will ask the Father, and he will give you another Advocate, to be with you forever. This is the Spirit of truth, whom the world cannot receive, because it neither sees him nor knows him. You know him, because he abides with you, and he will be in you. (John 14:16-17 NRS)
Truly, as parents we are strengthened as advocates because the ultimate Advocate is with us.
Holy Advocate, thank you for aiding us in seeking justice and services for our children. Strengthen us when we feel weak, renew us when we feel tired, freshen our perspectives when we are discouraged, and soften hearts so that we hear a “yes” for our children who are made in your glorious image. Amen