When our family was thrust into the world of mental illness, we felt like we had been cast into outer space. We moved from having a daughter with an eating disorder, like every other young woman in her class, to a child that was seriously and persistently mentally ill; from a child that was early decision to one of the Ivies to a child that was not well enough to attend college.
We searched for information. We tried to understand the public mental health system and figure out whether our private insurance was sufficient. We spent hours on the phone, moving from one contact to another, saving our handwritten notes as though they were the Dead Sea Scrolls.
Now that we are 12 years into this journey, the New York City community finally has a behavioral health web site to help families, consumers and providers. Go to www.nycnetworkofcare.org to see the site developed for New York City by the National Alliance on Mental Illness of New York City, Inc. (NAMI-NYC Metro) through funds raised through the annual NAMI Walk. It is an online clearinghouse that provides critical information, communications and advocacy through a single point of entry. It ensures there is "No Wrong Door" for those navigating the system of behavioral health services.
Let me illustrate the uses of this comprehensive website.
The Services Directory
There have been many times in my family's history when we have tried to identify services or programs that would be appropriate for our child. In the early years, she was hospitalized repeatedly. At the end of each inpatient stay, it was necessary to put together a discharge plan -- a treatment plan that would hopefully prevent the next hospitalization.
As parents, we became discharge planners. Why? Because the social workers that worked at the hospitals as discharge planners had limited information about available day programs, group therapies, volunteer opportunities, rehabilitation services. They had no comprehensive, updated guide to what was available on a borough-by-borough basis.
The Network of Care has now been loaded with over 3000 entries about programs and services in the five boroughs. If an Asian family is looking for a culturally appropriate program, that information can actually be found on the Network of Care. If I were looking for a program that might prepare my child to go into the workforce, the Network of Care would provide me guidance. And the best part, given the diversity in New York City, is that some of the information on Network of Care is available in 13 languages as well as sign language.
Let's talk about housing. There were many times in our journey when it did not appear in my child's interest to live at home. The search for housing for mentally ill persons is a task that falls to family, and it is a very complex subject. There is supportive housing, low income housing, government-sponsored housing, private housing; residential treatment programs. There is an unfamiliar vocabulary and an endless search.
The Network of Care has a Housing section designed by the Center for Urban Community Services (CUCS) which explains the subject in plain English and gives directions on how and where to apply.
The Network of Care has an INSURANCE channel with information about private insurance, government programs, Veterans insurance and even insurance for the uninsured -- i.e. individuals that do not qualify for public insurance programs and do not have insurance through their employers. When mental illness struck our middle class working family, we had private insurance. This was pre-parity, pre-Timothy's law, so our private policy had arbitrary limits on mental health benefits. So my child entered the world of MEDICAID -- a process and a government benefit that was wholly unfamiliar to us. Families now have the Network of Care as a gateway to this world of mental health insurance.
Personal Record Keeping
As parents, one of our jobs has been to maintain a record of our child's history in terms of psychotropic drugs used and abandoned; hospitalizations; other forms of treatment such as ECT; and the contact information for providers that have included psychopharmacologists, therapists, eating disorder specialists, nutritionists, group therapies; inpatient information.
My own memo for my daughter runs more than 50 pages. It is critical to have this kind of history in easily accessible form because mental illness is often chronic; medications sometimes have to be changed or adjusted; hospitalizations may occur.
Network of Care has a channel called MY FOLDER, which is a secure location where either family members or consumers can enter medical information and keep it current. In the event of an incapacity or hospitalization, access could be provided to this electronic medical record to the treatment team. The Network of Care accomplishes what state and federal governments have only dreamed about.
In sum, as a family member, I am so grateful to NAMI for the Network of Care -- a virtual encyclopedia of mental health information custom made for New Yorkers. Please visit www.networkofcare.org to tell me what you think.