Anne Henry: Seven points that need to be made

Below is Anne Henry’s speech, given after she received the Charlie Smith Award at the Access Press banquet on Nov. 6. 

Thank you all very much. I am both humbled and honored to receive this award. It is such a thrill for me to be given an award bearing Charlie Smith’s name. More about Charlie in a moment.

First, I want to extend my gratitude to the Access Press Board, its able editor, Tim Benjamin, and all the staff.

Second, I want to say that my colleagues sitting in these two tables here in front of me share in this honor because of the work they do and the supportive environment they provide in which I have the privilege of working. Thank you so much to all of my trusted colleagues at the Disability Law Center. Here tonight are:  our Legal Director, Pamela Hoopes, Bud, Brenda, Kathy, Nancy, our Executive Director, Jerry Lane, Jennifer, Rochelle, and Mai and Luther, whom I still consider colleagues.Anne Henry

I have always felt very lucky to work at the Disability Law Center with these fantastic folks. Nothing good that I have done during my work at the DLC has been the result of my efforts alone—these folks share this honor because they share my work!

 Thank you, too, to all of the disability advocates and organizations, to the Consortium for Citizens with Disabilities and all its members, and others who are active and engaged and make a huge difference; in fact, you make my policy advocacy work possible. Also thank you to the good people within government and agencies, principled people with strong values supporting persons with disabilities.

    Of course, my greatest appreciation goes to the children and adults with disabilities and their families. Inspiring and motivating people willing to share their lives to create change. You are heroic, brave and oh so inspiring. Thank you all!

Finally, I want to thank my wonderful family. My husband, Jerry, and my sister, Suzanna, are here. And I want to note that my good fortune to be part of a supportive family has led to the very strong and painful recognition that too many people with disabilities don’t have supportive relationships, they are isolated and cut off. A bit later I’m going to talk about seven challenges facing the disability advocacy community, but I want to add social isolation as number eight. And I want to give credit to John Tschida who has relentlessly pursued the issue of social isolation faced by many with disabilities and how to change it. Thank you John; this issue is so deserving of serious attention and effort. Everyone needs supportive relationships. We should do everything possible to preserve those relationships and to help establish them where needed.

Now, back to Charlie Smith and why this honor in his name is so very meaningful to me. I had the fortunate opportunity to work with Charlie on numerous issues over 1-1/2 decades. Charlie was a delightful individual; smart, funny, kind, frank, and always willing to show up and get involved. Charlie’s work exemplified his very strong belief in the power of information; knowledge is power. That principle has been inspirational for me and the basis for my work to provide people all of the information about policies, the changes that impact them and how to get involved in affecting those policy.

Tonight, over the next ten or so minutes, I want to reflect on some incredible changes that have occurred during my career thus far and give you my list of seven (but, of course, already eight, with social isolation) important challenges that we face. First, I’ll review three areas of great change. I have been so very lucky to have worked in this field during some really interesting times of change. Again, all of the work I’ve been involved with has involved others, of course, and credit in our field should always be shared. All of you here tonight undoubtedly deserve some credit for these three positive changes. Thank you for that!

A highlight for me was my work on the Welsch case with Luther, Mike Fargione, Pat Siebert, Kathy McDonald, and Carol Rydel from about 1979 through 1989. A defining experience for me in the context of that critically important, nearly 20-year long case, was the involvement with children who lived in those state institutions and working to allow them to move to community services and lives much more like children ought to have. That work lead to the TEFRA option under Medical Assistance and home- and community-based waiver services to allow families to keep their kids at home. Prior to TEFRA and the home- and community-based waivers, parents were faced with the impossible decision, like “Sophie’s Choice,” of impoverishing the whole family to get care for their child with a disability, or placing that child in a facility. After 30 days in a facility, the child became eligible on their own for MA. Supporting families and having kids grow up at home and go to school has been a cherished area of my work over the years and so very, very fulfilling.

The second area of great change has been closing those institutions that were the subject of the Welsch case, a task not yet finished. Ridding society of the notion that people with disabilities should be removed and separated has been a very long road. The change in this area, though, has been very exciting and made a huge difference in the lives of many, many people with disabilities and their families and all of the rest of society.

    Third, I feel so fortunate to have been part of the movement to place disability rights squarely in the civil rights context—the Minnesota Human Rights Act, Section 504, the Americans with Disabilities Act, the inclusion of people with disabilities in every aspect of our communities because it is their right to participate – has been so powerful.

Let me turn now to the seven challenges and don’t forget the eighth challenge I mentioned a few minutes ago, social isolation. 

1. Of course, health care reform at the national and state level is a huge challenge. People with disabilities have so much at stake in health care reform and don’t let anyone tell you differently. The pressure on public resources is very strong and we simply have got to improve the hugely dysfunctional health care system and cover uninsured people in our society. A little publicized part of the national reform is the CLASS Act, a voluntary, self-insured national long-term care insurance program financed by voluntary payroll withholding. This should have been part of Medicare in 1965. Think of how much better off we’d be had the CLASS Act been passed then.

2. Positive behavioral practices.  When I was in college in the late 60s, majoring in child psychology, I learned very, very clearly that the effectiveness of positive behavioral practices was scientifically proven and that punishment did not work. Punishment suppresses behavior; it does not replace problem behavior with appropriate behavior; it is not effective in teaching new skills. Why, today, over 30 years later, do we find that in the name of teaching and treatment, schools are using aversive practices on students with disabilities; children and adults are subjected to aversive practices in residential programs, and our state facility, the Minnesota Extended Treatment Option, in the name of treatment used aversive practices on people with developmental disabilities and mental illnesses?  We are supposed to be using scientifically proven evidence-based practices in all of our health care and our treatment decisions. Positive behavioral practices are as proven as aspirin. We have got to be sure that aversive practices are replaced with positive behavioral practices throughout our state for everyone. Not only do these aversive practices not work–they cause harm, and they are abusive. The disability  community has a lot to offer  our larger society by leading the way to eradicate our the negative, punishing ways which seem so embedded in our culture, by showing the effectiveness of positive behavior practices and modeling those techniques everywhere.

3. Employment.   I am convinced that for the foreseeable future we will not have the public resources needed to lift people with disabilities out of the poverty we crush them with when they need community support services and health care in the Medicaid program. It is vital that children with disabilities (and their parents) grow up expecting that they will be employed and that they will learn the skills they need for a job during their school years. Teens with disabilities need to get jobs like other teens do. The best way to learn job skills, of course, is by having a job. We also need data from school districts across the state about the number of students who have paying jobs while in school and the number who have a job when they graduate. We’ve got to have accountability for those years in school for kids with disabilities. Employment is crucial to build better adult lives for everyone.

4. Independence. While we have made great strides in having more community-based service options and including kids in school, we still have a long way to go in promoting independence for persons with disabilities. Far too many adults have guardians or group home staff or others in their lives making their decisions and choices for them. It is crucial that people with disabilities be supported to make choices and increase their independence and sense of personal empowerment which we all need in our lives.

5. Mental health.  There are two aspects to our mental health challenge. We have had some really important changes in our mental health system during this decade. We must credit persons with mental illnesses, families and strong and effective advocacy organizations for these important changes. But as those of you who work with me on personal care assistant services know, we have gone backwards dramatically in community support services for people disabled by their mental illness. We must not fail to provide community services to people whose need for functional help to live in their homes is a result of their mental illness. Unfortunately, the services that have been providing those essential supports to maintain apartments, get to medical appointments, prepare and eat healthy meals, take medications and live in the community are being taken away from folks with mental illness and children and adults who have challenging behaviors, whatever the underlying diagnoses . This is really tragic. Much unnecessary suffering will occur.

The second aspect of our mental health challenge is that many people with other disabilities—physical disabilities, developmental disabilities, brain injury—have the need for mental health services and do not get those services. We continue to be very “siloed” in the way people obtain health care and supports to live in the community. The benefits of mental health treatment have got to be more available to people with a whole variety of other disabilities and diagnoses. Lives will be improved with appropriate access to mental health services for those with other primary diagnoses or disabilities.

6. Greed.  While I have written “greed” in my notes, that’s just a prompt to help me remember to talk about public funding and government. These very tight economic times, which are too often shot through with extreme selfishness, have sharpened the anti-government, anti-tax rhetoric in our society. Now it’s fine to criticize the government or a particular tax, but it’s really important to do so in a targeted and specific way. When you hear people railing against government and complaining about all taxes, it’s important to engage them in a conversation so they can understand that such blanket negativity about public funding and government programs is harmful to people with disabilities. People with disabilities rely on public funding to pay for the supports and services that allow them to participate in the life of our community. Children and adults with disabilities’ needs for community support services, durable medical equipment, rehabilitation and habilitation services have been rejected by our nation’s private, mainly employer-based health system. Public funding of Medicaid has had to pick up all these areas excluded by private coverage. Most people who rail against government and taxes would also say they support people with disabilities living in their communities. This disconnect has got to be confronted so that people understand supporting people with disabilities must include supporting taxes and making our government effective and accountable.

7. Involvement and action.  Now, I’m going to loop back to Charlie Smith. I know I’m really preaching to all you choir members. Because you’re here, I know you are involved and active. But we need to engage other people to be involved and active on behalf of issues affecting persons with disabilities. Charlie was no armchair philosopher or academician; he actively and tirelessly promoted change using his belief in the power of information and knowledge. He was willing to testify on very short notice, always publicly spoke out when services and rights were threatened and led a peaceful sit-in in the governor’s office to protest the 1995 cuts to PCA services. Charlie made change by using the information and knowledge he consistently provided to us through Access Press. That’s what we all must continue to do.

Thank you. Thank you so much for this terrific honor. I will cherish it always.

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