Talking With You: Weblog

Whose Disability Is It?

I am incredibly fortunate to have a loving, supportive husband, great kids (even if they are adults and still make me a little crazy) and a fulfilling, meaningful job to go to every day. It is a pleasure to work for an organization where the Mission, values and principles mesh with my own so well. My grandbabies are growing so fast it just astonishes me.

Earlier this summer my niece got married in Scottsdale and it was wonderful. I will never think of dancing at the reception in the same way. My niece married a man who is Tongan. She is half Samoan and dances with a semi-professional Polynesian dance troupe. Her dance troupe came and performed at the reception, including a fire knife dance. After they were done, both sides of the bridal couple performed dances for and gave gifts to the other side of the family. We had such fun and as a bonus got to spend several days with my parents since we rented a minivan and took them along.

It was a blessing to see how everyone accepted my daughter and did their best to understand what she was saying. She has a difficult time talking and if she feels pressured to talk she gets frustrated and stops trying. My heart aches when she doesn’t fit in or isn’t included in activities because of her disability but she had dance partners until the D.J. packed up his equipment to leave.

Jennifer has tremendous gifts to share but frequently people don’t take the time to get to know her and benefit from that. She gives the best hugs. When she is hugging you nothing else matters to her but you. She loves old people (as she calls them – grandmas and grandpas). She loves to take care of people. She has a wonderful sense of humor and wants all our friends and family to live at our house. If people can’t see past her disability to all these gifts and more, who has the disability?

I am counting my blessings and I thank God for all those good people in our lives who love my family and work to make Jennifer’s life meaningful and full. I hope you have people in your family’s life who are blessings to you and enrich your lives.

Till next time,
Doris

A New Way of Thinking

This has been an extremely busy few months. Tremendous changes are happening for people with disabilities and their families. I am even dreaming about work at night. I think I need a vacation.
The Federal government – Centers for Medicare and Medicaid (CMS) – approved New Mexico’s Medicaid Home and Community-Based Waiver Mi Via. This is the culmination of thousands of hours of work over several years by self-advocates, families, advocates, service providers and state employees. Mi Via is the most comprehensive home and community-based waiver in the country. No other state has even attempted to put together a program that covers all disability groups, including brain injury, with a selection of services that encompasses almost anything anyone with a disability would need and still gives control of the money to the individual receiving services. Everyone who had a hand in bringing Mi Via into existence should pat themselves on the back. It is a job well done!
Our daughter, Jennifer, has a very simple ISP so I don’t think we will hurry to change to Mi Via. She also has a great case manager – Randy - who has been very helpful and I’m not interested in reducing his time with us. I am, however, very happy that another choice exists if we do want something different in the future. So much to think about. Such a tired brain.
I am trying to have a real life in addition to work. I can’t believe that it is past time to start thinking about Thanksgiving and Christmas. We usually have Thanksgiving at my parents’ house and then everyone comes to our house for Christmas. There could be as many as 20 people to feed. Time now to start the lists – presents, invitations, menus, shopping, etc.
I hope you have a very safe and fulfilling holiday season.

Doris

Worrying about (and wanting) Inclusion

Today is the birthday for one of my sons. Now I know I’m old. I’ve been going through back issues of The Arc’s newsletter in order to help with a project to identify the milestones in long term care policy and activities at the national and state level over about the last thirty years. (I even remember some of them.)
Doing this reminds me of how far we have come in our disability policy. Or maybe we have just come full circle – back to a time when people with disabilities were simply a part of their communities. Before we tried to “fix” them or “protect” them or “protect” us from them. Except for school where I’m not sure kids with disabilities were ever fully included, there have been times and communities where people with disabilities belonged and were participants in community life.
It seems a shame to have to work so hard to be accepted as an important member of society with the value and respect due each of us. The fact remains that only the people with disabilities and their families and advocates have a vested interest in changing the status quo. It was true in the past and it remains true today. For all other groups of people, change means having to think and act differently and that is hard. It means changing how they do their jobs, what jobs they hold, where they work, who their co-workers are and with whom they will socialize and worship.
It is so easy to stay in our own safe lives never realizing the fuller lives that wait for us when we recognize and embrace the diversity of abilities in the people who share our communities.
This acceptance and inclusion is what I want for my daughter.

Doris

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Guardianship, Families & Freedom

In this session legislation has been introduced to appropriate $150,000 to “identify the number of adults in New Mexico who are under probate court guardianship status due to incapacity, to list guardians who have a responsibility to file annual reports and to review guardianship arrangements to ensure that the needs of incapacitated adults are being met.” This is intended to address all guardianship arrangements whether or not the state pays for the service. It will also not just be limited to parents named as guardians for their adult children but will also impact adult children who are guardians for their parents.

This creates conflicting feelings in me. From the public policy perspective, I understand and agree with the need for the Courts to monitor the well-being of individuals who have had their decision making rights removed because they were determined to be incapacitated and unable to make decisions. We have all heard the horror stories about the terrible conditions in which people who are disabled have been found. That cannot be allowed to continue.

On the other hand, my husband and I are guardians for our adult daughter who has a disability. We agreed as a condition of guardianship to file annual reports with the Court about the decisions and activities undertaken on behalf of our daughter. Since we are doing what the Court has asked of us, having the Court records about our daughter’s disability opened and a social worker visit and make a determination of whether or not we are adequately meeting our daughter’s needs feels like an invasion of the privacy of our family and a prior judgment that we can’t be trusted.

I don’t know if there is any way to reconcile these feelings.

It is our family’s desire to have our daughter as independent as possible, enjoying a life in the community. In order for this to happen, she can’t be kept in a cocoon totally safe from all risks. She has to be allowed to try new things even if trying them makes us worry. One example is allowing her to spend time alone at home. She likes to be home alone occasionally. During that time we worry about something happening and being accused of neglect for leaving her there. We wonder if someone without direct experience can understand the importance of allowing risks that lead to personal growth in a person with a disability who some may see as needing full protection.

Maybe with processes in place that assure that confidentiality will be maintained and that the people who will be carrying out the visits have appropriate training about community living and acceptable risk among other topics, I will learn to become a little more comfortable with the activities.

Talk to me about your experiences as guardian and the difficulty in walking the line between to much risk and no freedom at all.

Ambivalently Yours,
Doris

Blessings

I have my family. My husband, children, grandchild (and soon to be another), parents, brother, sister, nieces and nephew are all still living and in reasonably good health. And, except for my brother, all live close enough to see regularly. I have a warm house, good food, good friends, and a caring church community. I have the freedom and ability to go where I choose when I choose. I have a good job that affords me the opportunity to make a positive difference in people’s lives and co-workers who make coming to work a pleasure. And I have all of you – you who are the heart of The Arc of New Mexico and the work that we do.

Too many individuals with developmental disabilities in New Mexico and elsewhere lead lives that break my heart enjoying almost none of the blessings I enjoy. People whose only daily contact is the caregiver paid to be in their life. People who haven’t found a good job that allows them to live in good quality housing and not in poverty. People who don’t feel a sense of belonging in their community.

My New Year’s resolution is that together we can make all of my blessings (and I hope yours) become realities in the lives of people with developmental disabilities in every community in New Mexico.

Gratefully,
Doris

Welcome to my Weblog!

Dear Readers,

This is a first for me. I never in my wildest dreams thought I would be writing a blog. In fact, I had to find and read some in order to get an idea of how they work. I have never kept a journal and I think this will feel much like talking to myself so please bear with me while I learn.

I plan to write a new piece at least weekly and, if I learn to do this easily, more often, especially during the legislative session. I will talk about current issues, try and answer questions, give the most up-to-date information available and anything else I think might be of interest to you.

Since this is a get acquainted blog let me tell you a little about myself. I am the Public Policy Director here at The Arc and have been here since January 1997. Just prior to coming to The Arc I spent a year on a Fellowship from the Joseph P. Kennedy, Jr. Foundation working for US House of Representatives Committee on Economic and Educational Opportunities. (Now the Committee on Education and the Workforce) This is the committee that authorizes the ADA, IDEA, Older Americans Act, the Rehabilitation Act, all education legislation and many other issues. I worked primarily on IDEA and other disability concerns. And before that I worked for Parents Reaching Out for nine years as an advocate/trainer. I am the registered lobbyist for The Arc and during the legislative session can only be found in Santa Fe at the Capital.

I am married with three children (all of whom are adults) and have one grandson. I don’t, however, carry much in the way of pictures. My daughter, the youngest of my children, has a developmental disability and uses Developmental Disability Waiver services.

Please talk to me through my e-mail link, giving me your name and address. I want to hear about you and your family. Tell me what is working for you and what is not. Tell me about your experiences interacting with state personnel, procedures, regulation and law. If I say something that you don’t understand, ask me to explain myself. Occasionally, your message identified by first name and town will be posted so other readers can benefit from your words. If you ask me not to post your message, I will respect your wishes.

Stay tuned.

Doris