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November 2, 2022

The Ally: With Heartfelt Gratitude and Sweet Memories

 

Thank you, from the bottom of my heart, for the kind thoughts, cards, calls, visits, prayers, words and actions you shared with my family and me during the prolonged illness of and since the death of my husband, Howard Roffwarg. Your compassion, patience and understanding made our journey more bearable and less lonely.

Howard will always be "Howie the husband" in my heart. Howie loved Families as Allies. He loved what Families as Allies stands for. And he loved those of you he met through Families as Allies. It is so sweet to me that one of his last big outings was to Families as Allies' 2019 Community Partnership Celebration. We got to thank Congressman Gregg Harper for his advocacy for the Americans with Disabilities Act (ADA) and tell him how the ADA helped our son. Howie's last (and probably most treasured) outing was in February 2022 to watch one of our son's college baseball games.

I met Howie in the early 1990s. He was the psychiatrist expert consultant at a "difficult-case conference" at a state hospital in Texas, where I had just begun my career as a psychologist. I was impressed with his expertise as he talked to the patient. Many people, including some of the psychiatrists in the room, had given up on that man. Howie's kindness and compassion touched me as he talked to the man and his family. He then worked with them to find solutions that made sense to them.

I am thankful that every day for the past several months, including the day he died, Howie and I were able to tell each other that we loved each other. It was harder over time to have conversations that went beyond saying I love you.

A day or two after I attended the Oct. 5th hearing in the U.S. v Mississippi lawsuit, Howie had more energy than usual and wanted to talk. He asked me if anything interesting was happening at work. I told him about the hearing and that it looked like the actual enforcement of the ADA could be threatened. He listened, then calmly and firmly said, "You have to keep fighting." That was our last in-depth conversation.

I am touched that those two conversations about standing with people with mental illness bookended my life with Howie. I am sharing those bookends with you in case they also touch you.

One of the health problems Howie had was frontotemporal degeneration, a brain condition that can happen at any time during adulthood but usually occurs between ages 40 and 60. It's an often-misdiagnosed condition that can affect behavior, language or movement. I am so thankful for the support of the Association for Frontotemporal Degeneration (AFTD). I share this information in case anyone reading this might be experiencing something similar in their family and wondering where to turn. This video is helpful too. (I am also happy to discuss our experience if you want to contact me. )

I just returned to the office. We hope to have a full newsletter out next week. In the meantime, please take note of these updates:

  • Families as Allies Community Partnership Celebration, initially scheduled for Monday, Nov. 7th, is postponed and will be rescheduled in some format for January, likely Jan. 23rd. We hope to have details for you by next week.

  • On Nov. 3rd at 2:00 p.m. Central Time, the Office of Special Education (OSEP) will conduct a webinar on Discipline & Behavior Guidance related to the Department's recently released Guidance to Help Schools Support Students with Disabilities and Avoid Disparities In the Use of Discipline. The OSEP will present a general overview of the guidance package. Key topics will be discussed, including informal removals and longstanding practices that have resulted in high rates of exclusionary discipline for children with disabilities, particularly children with disabilities of color. Register here. Have you been told to pick up a child from school without the child being suspended? Or have you been told by a school to get a mental health evaluation or risk assessment of a child without the school offering to assist? If so, we recommend you attend this webinar. We will also provide follow-up information.

  • On Oct. 17th, The United States filed its response to questions the panel of Judges asked at the appeal hearing in the ongoing lawsuit about Mississippi's mental health system. The State of Mississippi filed its response on Oct. 27th. 

  • All families are welcome to join us for our virtual Drop-In Family Support Time on Nov. 3rd at noon CDT.

  • Remember the Mississippi Behavioral Health Planning and Advisory Council Meeting meets Thursday, Nov. 10, 2022, from 10:00 a.m. - 12:00 p.m. at the Mississippi State Hospital, Building 56. This meeting will be in person/virtual. Please join the meeting from Google Chrome on your computer if attending virtually: https://meet.goto.com/928165021

With much warmth and gratitude,

Joy Hogge signature
 

[Photo by Ben Vaughn on Unsplash]

EVENTS

 
The National Federation of Families Annual Conference is the premier event for children and youth with mental health challenges and their families. Bringing together family members, young adults, and professionals in a safe setting, free from stigma and one that celebrates skills and successes, our...
 
This hour is open for any family member to drop in for all or some of the time to share any concerns or get feedback from others about handling different situations. We ask anyone who stops by to respect the confidentiality of the group and not share anything discussed in the group outside of the...
 
Please join OSEP staff on November 3rd at 2pm (CDT) for a presentation and discussion regarding the Department's recently released, Guidance to Help Schools Support Students with Disabilities and Avoid Disparities In the Use of Discipline.
 
For any parents supporting other parents in any system. Parent peer support specialists, parent consultants, parent educators and parents who have completed parent peer support training are strongly encouraged to attend. We will discuss current trends in parent peer support, national standards for...
 
Federal law specifies the duties of the Joint Mental Health Planning Councils. >Duties include: To review the Mental Health Block Grant Plan and to make recommendations; To serve as an advocate for adults with serious mental illness, children with a serious emotional disturbance, and other...
 
Are you a parent or caregiver raising or raising a child aged 0-21 who has mental health or behavioral health challenges? Would you like to use your lived experience to help another parent who is on the same journey? Then being a parent peer supporter may be for you!
 
The Mississippi Autism Advisory Committee (MAAC) was created by House Bill 11252 (2011 Regular Session) as the Legislature recognized an urgent need for strategies on how to best identify, treat, educate, accommodate and employ people with Autism Spectrum Disorder (ASD) and assist their families.

RESOURCES

 
In a joint statement, American, Delta, United and other major air carriers are committing to a series of new steps to improve travel for people with "mobility, cognitive and social disabilities." Seven of the nation's passenger airlines are part of a new pledge organized through the industry trade...
Frequently Asked Questions about Rights of Children in Homeless Situations
 
When many people hear the word caregiver, they tend to think of someone who takes care of a disabled relative and acts almost like a home nurse while also taking care of finances, cooking, and cleaning. That's not wrong, but not all caregivers play such an involved role.