As a parent who has watched our daughter's self-esteem, confidence, joy and happiness soar with the critical SCL (Supported Community Living) services she receives, my husband and I have been feeling increasingly frightened as huge cuts to the Medicaid budget are being considered. So, when her case manager and agency staff invited us to advocate for her in specific ways, we signed on to do whatever we could. We made calls to federal and state senators and representatives, and had surprisingly positive experiences telling a bit of our story to staffers, who were kind and responsive.
The bigger leap for me, was deciding to participate in the IDaction Day at the Capitol, Advocating for Change in the Iowa General Assembly, on April 5th. I do not enjoy public speaking, and have no experience with meeting lawmakers, so went off to the Capitol feeling a swarm of butterflies and teary energy stirring around in my gut. Now, a couple of days later, I am SO glad I moved past my fears to hear my voice introducing our beautiful daughter to legislators who are in the midst of deliberations that will effect her quality of life.
The IDaction training session before seeking out legislators was very helpful and went a long way in helping to calm my fears about how to be part of the process. Getting to the Capitol and seeing Amy and Jodi was enormously encouraging as I decided to try to speak with legislators in our daughter's county, who may support big budget cuts. Beginning with gratitude for the Medicaid funding that makes SCL services possible and connecting the gratitude to specific successes like no hospitalizations, or group home, or sheltered workshop, but because of the funding, a first independent apartment with just a few SCL hours a week, competitive employment at her local HyVee with SE (Supported Employment) support only as needed, and our daughter's new mantra, "I'm happy mom, and I feel like a real adult," was the story that tumbled out, and was received by each legislator with kindness and compassion.
I have no illusions about the funding challenges ahead, and what that will mean to our families. I do have great hopefulness in the power of stories over time, to change hearts and make a difference for good in the world. I will choose this challenge again, and stand ready to pay forward the gift of mentoring to any who would like to join me.
Larry and Linda Christensen have graciously given us permission to share this sincere and genuine letter to Legislators which eloquently conveys the importance of supports for individuals with diagnosis of mental health or intellectual disabilities. Many thanks to Larry and Linda for advocating for your daughter, and all who would be affected by funding cuts.
I am writing with regard to proposed changes and cuts in Medicaid. My wife and I know that changes are necessary to preserve this valuable program. We are supportive of eliminating waste and duplication in every part of government and its programs. We also have fears and concerns. We are old enough to remember when facilities for the mentally ill were closed – for good reasons – before there was an adequate system in place to receive those patients displaced.
We are parents of an adult daughter who is both developmentally delayed and afflicted with complicated mental illness issues. Her teen years through her late twenties were a nightmare as she engaged in dangerous and self-destructive behaviors.
The last decade has seen a remarkable turnaround due to the help and support she receives from workers and agencies that receive most of their funding from Medicaid. Our daughter has moved beyond group homes and 24 hour Waiver Homes to living in her first apartment where she receives help with medication management, cooking, cleaning, meal preparation, exercise, and other living skills through Supported Community Living staff (SCL) who visit her a few hours a week, in her community of Atlantic, Iowa.
In earlier years our daughter could not hold a job and lost confidence that she would ever be employable. In the past few years she has moved from a sheltered workshop to part time, competitive, community employment at her local HyVee with Supported Employment coaching and monitoring.
After years of hospitalizations and repeated failures our daughter is happy, feels proud of herself, and is a contributing and valued member of her community. Even we as her parents could not have done for our daughter what a community of informed, dedicated, trained, and organized professionals who know her well and are able to help her accomplish her goals. We have seen and know well, how each of the pieces that support our daughter is a building block that makes successful independent living possible for her.
We fear for our daughter’s future if changes and cuts are made in the wrong way, or if an impersonal, distant process is substituted for trusted relationships.
We ask that you keep the people of Iowa who depend on Medicaid in your mind and heart as you vote on our daughter’s future.
Early in March, HOPE Agency put on a conference for all employees to attend free of charge. Asking employees to give up a Friday night and Saturday morning seemed payment enough! In preparation, we look at feedback given throughout the year as to what topics and areas of focus our employees would like additional training and support. Then the search for outside speakers and experts to come and share on the various topics begins. A few of the topics covered this year were oral health care, taking care of oneself, the changing tide in supported employment and a personality assessment. The event was attended by over 70% of all employees and the energy generated at the event was and is contagious. And, the ripple effects are still being felt. Here is yet another example of the dedication of HOPE employees. A HUGE thanks to all that helped make the event a success as well as to all those who attended!