​Supports for Caregivers and Family Members

Name	Website	Description
On Track New York (OTNY)	ontrackny.org	Family Advisory Council: Meets once a month, newsletter Parent Groups: Informational meetings offered at the start of OnTrack, check with site to ensure you can still attend after discharge
National Alliance on Mental Illness (NAMI)	naminycmetro.org	NAMI helps families and individuals affected by mental illness build better lives through education, support, and advocacy. Resources for family members and friends include a helpline, support groups, classes, and peer support. Link to resources for family members: naminycmetro.org/family-members-friends
Families Together New York State	ftnys.org	Represents, advocates for families of children with social, emotional, behavioral, cross-systems challenges including mental health.  Collaborates with families, providers and schools.
LEAP Institute	leapinstitute.org	Anosognosia training, videos, certifications by Dr. Xavier Amador, author of I'm Not Sick I Don't Need Help.
Jewish Community Center (JCC) Manhattan ​	www.vosjcc.org	Programs for siblings of mentally ill loved ones
​Red Tent Women’s Circle	redtentdirectory.com  ​​	Spaces intentionally co-created for women to share, connect and authentically be Share stories, rest and gain strength from being together and supporting one another​
​AI-Anon Family Groups	al-anon.org​	Mutual support program for people whose lives have been affected by someone else’s drinking "By sharing common experiences and applying the Al-Anon principles, families and friends of alcoholics can bring positive changes to their individual situations, whether or not the alcoholic admits the existence of a drinking problem or seeks help."
Substance Abuse and Mental Health Services Administration (SAMHSA’s) National Helpline  ​	Call: 1-800-662-HELP (4357)  findtreatment.gov	"SAMHSA’s National Helpline is a free, confidential, 24/7, 365-day-a-year treatment referral and information service (in English and Spanish) for individuals and families facing mental and/or substance use disorders. "​
RISE NY ​	​rise-ny.org/advocacy-services/index.aspx	"Confidential advocacy services to victims of domestic violence, whether or not they require shelter All advocates assist with safety planning, education about the dynamics of abusive relationships, referrals to our other services, help with community resources, and emergency assistance for necessities".​
​Freedom Care	freedomcare.com/for-caregivers/	Through Medicaid, caregivers can be paid to provide care to their loved one​
​HIPPA and FERPA Laws	cdc.gov/phlp/publications/topic/healthinformationprivacy.html	Caregivers should know what the exceptions are for providers to share medical information without consent ​
​Team Daniel Running for Recovery and the Clozapine Community	facebook.com/teamdanielformentalhealth/	For clozapine advocates, prescribers, family members and patients who take the antipsychotic clozapine (Clozaril). Team Daniel’s purpose is to share information from the book, Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine, by Dr. Robert Laitman, and Dr. Ann Mandel Laitman.
​Akin Mental Health	​akinmh	"Akin offers an online program for family members of loved ones with mental illness. We offer two levels of support through our program. First, we offer the Live Guidance tier which includes weekly live workshops over Zoom and an initial consultation call with an Akin Guide. Second, we offer a Self-guided tier which includes access to our video lessons and online community of other families. The program’s core curriculum includes 12 lessons to give families evidence-based grounding in understanding mental illness, communication skills, problem solving, understanding treatment and preparing for crisis. Once members complete the core curriculum, we offer a Resilience group for ongoing support and group coaching."
Special Needs Alliance	specialneedsalliance.org/find-an-attorney/​	"The Special Needs Alliance (SNA) is a national organization comprised of attorneys committed to the practice of disability and public benefits law. Individuals with disabilities, their families and their advisors rely on the SNA to connect them with nearby attorneys who focus their practices in the disability law arena."
National Guardianship Alliance	guardianship.org/	"NGA believes that those appointed to the care of guardians, conservators, and fiduciaries deserve quality services and that every person should be provided respect, due process, rights, and dignity in guardianship. NGA represents more than 1000 guardians, conservators, and fiduciaries from across the United States who share this vision. They are professionals, volunteers, and family guardians. NGA seeks to protect adults under guardianship by ensuring that their guardians receive quality education and access to resources. The association is recognized as the leading national resource for professional development."
Psychosis REACH Training	psychosis-reach-overview/	"Psychosis REACH is a training that offers concrete, evidence-based skills for relatives and friends of individuals with psychotic disorders to better care for and relate to their loved ones. It takes a proven psychotherapy for people with schizophrenia and other psychotic disorders, Cognitive Behavioral Therapy (CBT), and modifies it to the needs of caregivers."
Schizophrenia and Psychosis Action Alliance Webinars	sczaction.org/webinars-innovations-in-treatment-across-the-symptom-landscape/#completed-webinars	"This webinar series will explore how innovations in schizophrenia treatment can help people manage their disease – and how clinicians can work with their patients to achieve meaningful treatment outcomes. The series takes a fresh approach by presenting diagnosed people’s perspectives side by side with those of clinicians and caregivers – providing strategies and insights in a more interactive environment outside of the doctor’s office. Each webinar is focused on one of the main types of schizophrenia symptoms: positive, negative and cognitive. Featured speakers will use plain language to ensure all participants can understand and act on the information shared. With proper treatment and support, many people with schizophrenia can achieve recovery, including returning to work or school, enjoying friendships and living a meaning-driven life. This webinar series is a resource to empower all of us – those living with the disease, caregivers and clinicians – with tools to help reach that goal."

 

Support for Loved Ones

Name	Website	Description
On Track New York (OTNY)	ontrackny.org	Arcade, Newsletter, Youth and Young Adult Leadership Council: for young person 2 years or less after discharge​
EPINET	nationalepinet.org	National program, includes OnTrack,  with a focus on early psychosis clinics ​You can find the closest OnTrack by going to their website.
National Empowerment Center	power2u.org	Provides information and resources to help people with SMIs to regain control over their lives
New York Association of Psychiatric Rehabilitation Services (NYAPRS)	nyaprs.org	​​Statewide coalition of people who use and/or provide recovery oriented community based mental health services "NYAPRS is dedicated to improving services and social conditions for people with psychiatric disabilities or diagnoses, and those with trauma-related conditions by promoting their recovery, rehabilitation and rights so that all people can participate freely in the opportunities of society."
Schizophrenia & Psychosis Action Alliance ​	sczaction.org	“Our vision is to see schizophrenia and psychosis spectrum disorders universally recognized and treated as neurobiological brain illnesses. Our mission is to create a movement for systemic change to improve care, support, and equity for the millions of people living with schizophrenia and psychosis spectrum disorders.”
Fountain House ​	fountainhouse.org	"National mental health nonprofit fighting to improve health, increase opportunity, and end social and economic isolation for people most impacted by mental illness." 200 community-based social rehabilitative programs known as clubhouses in nearly 40 states and with more than 60,000 members
Institute for Community Living NY ​	iclinc.org	Helps children, adults and families—New Yorkers of all backgrounds and ages—living with serious mental illness, substance use disorder, and developmental disabilities achieve greater health and independence.   Housing and mental health clinics, PROS day program for life skills, evaluation, therapy, medication management, social rehab and work readiness. ​
The Institute for Family Health ​	​institute.org	"One of the largest community health centers in New York State, serving over 100,000 patients annually at 29 locations. ​The Institute is committed to high-quality, affordable health care for all. We strive for excellence at each of our 29 practices, while accepting all patients regardless of their ability to pay. We offer primary care, mental health, dental care, social work and many other services to patients of all ages."
Woman Kind ​	Call: (888)-888-7702 ​iamwomankind.org	“Womankind brings critical resources and deep cultural competency to help survivors of all ages find refuge, recovery, and renewal from domestic violence, human trafficking, and sexual violence. Through our programs, we offer a wide variety of services in 18+ Asian languages and dialects, including: a toll-free 24/7 multilingual helpline, safe and confidential emergency housing, culturally-informed counseling, family law and immigration legal assistance, wellness activities, creative arts therapy, support groups, and economic empowerment workshops. We are an expert in serving Asian communities, yet our services are valuable and available to all. Whether in our services or in our increasing advocacy and policy work, Womankind first centers the survivor by uplifting them to control their own lives and narratives.”
Alcoholics Anonymous (AA) ​	​aa.org	​"Alcoholics Anonymous is a fellowship of people who come together to solve their drinking problem. It doesn’t cost anything to attend A.A. meetings. There are no age or education requirements to participate. Membership is open to anyone who wants to do something about their drinking problem. A.A.’s primary purpose is to help alcoholics to achieve sobriety."
​​Team Daniel Running for Recovery and the Clozapine Community	facebook.com/teamdanielformentalhealth/	For clozapine advocates, prescribers, family members and patients who take the antipsychotic clozapine (Clozaril). Team Daniel’s purpose is to share information from the book, Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine, by Dr. Robert Laitman, and Dr. Ann Mandel Laitman.   ​
HARP Services	​omh.ny.gov/omhweb/bho/harp	"HARPs manage the Medicaid services for people who need them HARPs also manage an enhanced benefit package of Home and Community-Based Services (HCBS). HARPs provide enhanced care management for members to help them coordinate all their physical health, behavioral health and non-Medicaid support needs."

 

Resources for Finding Providers

Name	Website	Description
Psychology Today – Find a Therapist	psychologytoday.com/us	Platform for finding therapists where providers can be searched for based on the type of insurance they accept
Brave Health	bebravehealth.com	"Brave Health is a virtual mental health provider dedicated to helping people thrive by engaging them in high-quality, affordable, and easily accessible mental health care." Some therapists through platform accept Medicaid
NYC Well	nycwell.cityofnewyork.us/en/ Call 1 (888) 692-9355 or text 65173	"Free, confidential mental health support Speak to a counselor via phone, text, or chat and get access to mental health and substance use services, in more than 200 languages, 24/7/365."
Strong 365 Psychosis Support and Provider Directory	​professional-support/psychosis-support-provider-directory	Psychosis provider directory Information about coordinated specialty care Resources for young adults, families and friends

 

Housing & Resource Assistance

Name	Website	Description
Housing Works	housingworks.org	Assists with housing in NYC for LGBTQ community and provides homelessness, HIV, and substance abuse support.
NEC Directory of Peer Respites	power2u.org/directory-of-peer-respites/	Voluntary short-term overnight program, which is community-based, non-clinical crisis support Locations open 24/7 providing a "homelike" environment 100% of staff have lived experience
CORE Services Group NYC	coresv.cs.org	Emergency housing, alternative to incarceration, minority-run
Sleep in Heavenly Peace ​	​shpbeds.org	Build and provide free beds for children
Lasagna Love ​	​lasagnalove.org	Connects volunteers to provide free meals to families in need of some extra love and kindness.  ​

 

Job Opportunities for Loved Ones

Name	Website	Description
Adult Career & Continuing Education Services (ACCES-VR)	acces.nysed.gov	Career and continuing education services for adults with disabilities
Work Force One	nyc.gov/home/search/index.page?search-terms=careers	Help finding a job in NY State

 

Emergency Resources

Name	Contact	Description
988: A New Lifeline	Call 988 if situation is mental health emergency (harm to self or others) or 911 in any emergency	​​(from July 2022 Reader’s Digest): “In July (2022), the National Suicide Prevention Lifeline launched 988 as the quick-dial code for anyone in need of support for suicide prevention, substance abuse, self-harm, depression, anxiety, and other mental health need. The original number (1-800-273-8255) still works. Text and live chat are available and crisis counselors are trained to take calls in English and Spanish as well as for the LGBTQ population, the deaf, and other populations. "Even family members and friends who are worried about a loved one can call," says Ljiljana Zecevic, PhD, a clinical psychologist at Lennox Hill Hospital in New York City.”

 

Helpful Readings

Name	Website	Description
OnTrack Resources Brochure:	Link	"The OnTrackNY Family Council, a community of people who have a family member participating in OnTrackNY, created this 'Online Quick Guide' based on our experiences to make it easy for you to find the information and support you need online."
OnTrack Handbook​	Link	Explanation of how the OnTrack team works to encourage mentally ill loved ones to accept family engagement in recovery
Additional OnTrack Resources	ontrackny.org/Learn-Train/Resources	Links to sites with information for young adults, family members, providers and organizations
Pat Deegan’s Recovery Academy	commongroundprogram.com/academy-library​	An interesting resource from a prominent person living successfully with mental illness that can be accessed through OnTrack
​"24, and Trying to Outrun Schizophrenia"	www.nytimes.com/2024/12/30/health/schizophrenia-early-intervention-treatment
"A​ngry Moms Press FDA to Loosen Schizophrenia Drug Rules"	www.bloomberg.com/news/newsletters/2024-12-19/schizophrenia-drug-clozapine-hard-to-get-due-to-strict-fda-rules

Books:

Title	Author
Zig Zag Boy	Tanya Frank
Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine	Dr. Robert S. Laitma​
I Am Not Sick I Don’t Need Help: How to Help Someone with Mental Illness Accept Treatment	Xavier Amador
The Center Cannot Hold	​Elyn Saks
Gorilla and the Bird: A Memoir of Madness and a Mother's Love	Zack McDermott
Healing: Our Path from Mental Illness to Mental Health	Thomas Insel, M.D.
Insane Consequences: How the Mental Health Industry Fails the Mentally Ill	DJ Jaffe
No One Cares About Crazy People: The Chaos and Heartbreak of Mental Health in America	Ron Powers
The Collected Schizophrenias	​Esmé Weijun Wang
​Hidden Valley Road: Inside the Mind of an American Family	Robert Kolker
The Best Minds: A Story of Friendship, Madness, and the Tragedy of Good Intentions	​Jonathan Rosen

Articles:

Title	Link
Coordinated Specialty Care for First Episode Psychosis	Link
New York City to Involuntarily Remove Mentally Ill People from Streets	Link
Decision Making Deficits in Patients with First Episode and Chronic Schizophrenia	Link
Opinion | I Answer the Phone at a Mental Health Hotline: Here’s What I’ve Learned	Link
Addressing Clients’ Prejudices in Counseling	Link
Governor Hochul Announces $10 Million Available to Improve Mental Health Services for Youth and Families	Link
​The System That Failed Jordan Neely	Link
​Learning to Live with the Voices in Your Head	Link

Videos:

Title	Link
How-to Workshop: Advocacy – How to Do It?	Link

 

Questions put together by the NYU Family Connectors Team
For caregivers to ask providers:

1.  Have you read my loved-one's chart?

• If not, may we spend a few reviewing it together?
• If not, I'd like to make an appointment to do so (this is when you whip out your records and narrative, the essential "collateral information" providers need when working with someone who may not be in a rational state of mind)

2.  What experience have you had treating this condition of these symptoms?
3.  Will you encourage my loved-one to sign a HIPAA (or FERPA) release so you can share information with me?
4.  How can I update you if there are changes in behavior or concerns?
5.  What are the most effective treatment options for this diagnosis? What alternatives are there?
6.  Where can I get more information about this treatment?
7.  How long before we know whether this treatment is effective?
8.  What are the next steps if my loved-one refuses to take their medication? 
9.  Do you have admitting privileges at any hospitals?
10. Are you willing to communicate with my loved-one's other providers?
11. If you aren't available, do you have staff on call? 
12. Do you have any questions for me? 

More questions will arise as you move through this process. At first, things can be a murky swirl of fear and confusion, but there are answers to your questions out there, you might just have to ask for them. ​

For providers to ask caregivers:

1. Do you feel safe with your loved-one?
2. Had your loved-one indicated they are thinking about harming themself or others?
3. When did you begin being concerned with your loved-one's mental health?
4. What symptoms and/or behaviors have you observed?
5. Do you understand the diagnosis? Treatment plan?
6. Is your loved-one medication compliant? How do you know?
7. How has your loved-one's illness had an impact on you and your family?
8. What questions do you have for me?