A Mother's Words to State Legislators

Sat, November 28, 2015

We'd like to thank Bernice Polinsky for her continued advocacy and for sharing her remarks with YAI.

As a concerned parent like many of you, and proudly a parent member of advocacy groups for many years, currently YAI's Family Advisory Council, I am honored that I was asked to read this letter at the Legislative breakfast to our legislators.

Dear Legislators:

The following refers to our adult son, Michael Polinsky age 43, diagnosed with autism at 19. Michael resides in the Hicksville House run by YAI.

13 Years at YAI's Hicksville Residence

Time goes fast. It has been over 13 years since our son Michael moved into the Hicksville residence.  

In August, Michael was 43 years old.  He celebrated his 30th birthday his first year in this residence.

We had hoped that one day he could live and function independently.  Being realistic and accepting that we needed to change our expectations wasn't easy, and didn't happen overnight. 

Prior to his early twenties he functioned fairly well. He exercised, worked part time and was computer literate.

A Life Turns Upside Down

Then his world seemed to change drastically.

He developed mental health symptoms: anger, agitation, mood swings, anxiety, and paranoia. Life was extremely challenging for Michael and for our family.  

His daily life deteriorated. He had no friends and often tried to befriend those much younger because people his own age did not respond to him. Even those “friends” that he drove around or played video games with dwindled. Michael was always outgoing and friendly, but he was now often rejected. 

He became isolated, lonely and depressed. 

Finding effective medication was difficult. His life was a roller coaster of meds, first working and then not working. It was clear he was over-medicated.  He lost his energy and interest in most things. 

An Opportunity for Michael

We were at a loss for what to do next. 

We were told he had a good chance for a better quality of life by moving out of our house into a group home. Our hopes always were for him to be happy, to feel productive and to work again. Given what we heard about group homes in the media, it was the last thing we wanted for our son. We learned more about the positives regarding homes run by agencies such as YAI. We grew to accept this concept as the solution for our son's happiness and wellbeing. 

Luckily for us, Michael was included in a new residence being formed for higher functioning individuals. 

This was a chance for Michael to have needed structure, consistency and camaraderie. The staff was trained to handle his behavioral challenges. They also had the sense of humor that he needed. 

The medical professionals were astute advocates. The staff's goals included helping build relationships among the residents and enhancing their enjoyment of living together as a household.

His YAI residence provides him with a safe environment, needed supports, consistency, structure, 24/7 highly qualified staff, and other individuals who were well matched with Michael. They care about each other as if they are family. They enjoy his sweetness and sense of humor. 

He Says ‘He Is Happy'

If asked, Michael says he is happy and his life is good. 

The staff has helped make the house our son Michael lives in a true home for him and the other residents. It is a home that patiently, lovingly and skillfully supports our family members' quest for a  rich and meaningful life.  We could not even find the words to adequately describe our feelings and the gratitude we experience.  Over the last 13 years the staff has become like extended family to us. 

We are enormously grateful for YAI's partnership in caring for our son. They are responsive and skilled. 

Staff Go Above and Beyond

There have been times when his meds stopped working and the agency and staff dealt with a number of demands in partnership with his doctor.  Two years ago he became very agitated and he was temporarily confined to a local hospital.

A YAI doctor in collaboration with his treating psychiatrist was able to collaborate with the hospital doctor and they created a plan which proved to be effective!

We are forever grateful for the way the staff and the organization endured those difficult weeks. We are blessed that there are agencies such as YAI. These organizations not only provide ongoing services and supports for our loved ones with developmental disabilities, but serve as staunch advocates providing them with a voice in the larger society. 

Staff Need Salary Increases

The potential government changes alarm and concern us. 

The staff has been cut in every area piling on more work for existing staff. Therefore there is less effective time for each individual.  

Staff salaries must be increased to retain these high quality staff members and to further their skills.

Consistency is a primary concern and we sadly see key staff leaving for better salaries elsewhere. 

We fear the state will choose to place individuals with very severe behavioral challenges in this small house as new development of homes tailored for individual needs is not happening in the current fiscal environment. This would lead to tremendous upset, a disturbing environment and great dissatisfaction by all who are thriving. 

The development of more group homes is warranted. There are thousands of individuals waiting for similar placements where this is the most effective option.

Managed Care Fears

It concerns us that OPWDD's plans are to move into a managed care system.  What will happen to the people with developmental disabilities requiring 24/7, currently living at home with aging parents who can't advocate and provide support for their family member? With predicted cut backs we worry that providing better facilities for activities and job training will be halted.  

As parents and advocates we implore the powers that be to heed the warnings of a declining system that could lead us back to where this all started ... in a terrible environment.  

There must be ways the system can be remediated to accommodate the financial challenges. 

Thank you.

— Bernice and Irwin Polinsky, and Michael, too