Friday, September 26, 2014


I write this, in hopes that the feeling of being emotionally drained will dissipate. I attended a meeting coordinated through North Carolina's Department of Health and Human Services. The meeting's purpose was to listen to feedback from parents, caregivers, providers and consumers about the Innovations Waiver and other services through IDD Services (Intellectual and Developmental Delays) and Mental Health.

The Innovations Waiver is a program designed to help parents keep their IDD or mentally ill child at home and out of an institution. Ben has been part of this program for about 4 years. With state and county money, he receives managed care in the form of direct service providers that help with personal care and skill-building activities in the home and community. There is a long wait list to become part of the program, typically taking years to get the services.

Reluctantly, I went to the meeting with the only incentive being that my long time friend, Karen, would be there. We don't see each other often enough so this was an opportunity to see her.


The newly hired Deputy Secretary of Behavioral Health and Developmental Disabilities Services, Dave Richards, started the meeting. A personable and patient man, he seemed to be genuinely interested in hearing what everyone had to say. He gave guidelines for our comments - no personal stories allowed and let's keep it nice. In general, he was looking for system wide changes and ideas for the future. He had staff there recording these suggestions and listening to the problems shared.

About 100 people were in attendance. Most were women, seemingly mothers with children with IDD or Mental Health Issues. Most were white women in their 50's and 60's. There were a few black women of the same age range present. The black women came forward to speak at a higher rate than the white women.

Not many men were present and not one man spoke.

Most everyone who had something to say had the opportunity. The meeting lasted over two hours.

Many of the mothers spoke of their adult child in their late 20's or early 30's who had severe issues, some with both Mental Health and IDD issues. They had been in the system for years and had seen the many changes in programs, services, staffing and support. Overall, they were angry, hurt, bitter and sad. Their stories were heartbreaking. Each told of how they loved their son or daughter, how they tried to support them and may have given up a lot in their own life to help their child achieve some sort of happiness. Many had been lost in the system with paperwork glitches, unhelpful staff or changes in qualifications.

Some spouted out statistics, lawbook codes and judicial cases. Others explained that the policies in place were illegal. The anger spewing from their stories was evident. The hurt, they wore on their faces. The years of bitterness, they wanted to spread to the rest of us. I felt like new meat, several wanting to initiate me into their darkness.

It was hard for me to listen to each new mom that stood up. The room was thick with negativity. I did not want to be a part of this group of people. I felt separated from them. I wanted to be separate from them.

As I drove home, I thought about each of the women and their stories. Would that be me in 15 years time?

Just before I left the meeting, another woman spoke. She shared that she had a 32 year old daughter with special needs. Early on, she had been told that her daughter would not accomplish much in life. This same daughter holds a masters degree now. The mom said she understood the emotions of the people in the meeting; however, her belief was that  the focus must be on solutions. Anger and upset without support groups that strive for action would not accomplish much. The negative energy of the group was not helpful. The woman's words fell on deaf ears. This group had been through the system and delivered upside down.

I feel blessed to have Ben in the Innovations Waiver program. It is paid through taxpayer money, it is approved through state government and not every state provides this type of support. We have had a generally good experience with the people who administer the programs, and I believe that most have good intentions.

Unfortunately, we don't all have good experiences. I am not sure why. Is it education? people skills? not understanding the system? time? lack of 3rd party advocates? miscommunication? or are there more sinister things going on behind the scenes? It does not seem fair and equitable for some to have an enriched experience while others fall through the cracks.

I struggle with all of these issues, knowing that right now, I only have the physical and emotional energy to help Ben.

Although there was a lot of pain and emotion shared, many ideas were gleaned from the complaints.

Dave Richards has a long history of working for people with disabilities. I do hope that his heart and mind are in the right place and that he will carefully lead his department in the direction of providing clear and equitable programs and services for the people who need them. I add him to my prayer list - he has a heavy task ahead of him.


  1. Wow, I am floored it can take years to get waivered services in NC. I am more thankful than ever we got these services as soon as we applied for them when our daughter was a baby. We are going through some changes w/ our case manager - she is being transferred to work with teens and Faith is only 11. We're hoping for a good transition. We have had some issues with direct support services but always manage to get them worked out. I think it helps North Dakota is not as populous (less than one million in whole state!) so services are more available. It is truly heartbreaking for those who need the services and can't get it or have had bad experiences. Having a child w/ special needs takes a huge physical and emotional toll on parents and much more so when there is no support. I pray those in your state who can help implement the appropriate changes recognize that!

    1. Thank you Cari Jean for your comment. It does seem that from state to state the services, policies and procedures are very different. Some states are doing a better job than others. I would hope that there is a sharing of information and ideas about what works and what does not work between administrations.

      I do hope your transition goes well with a new case manager. It is so hard when there is turnover and job promotion. Change is hard for everyone involved.


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