Some journeys are too hard to go on alone. Having a trusted person to help you plan, organize, and make decisions regarding care and services can be invaluable to getting and staying on a good path. A guide, especially someone with experience, can often see things with less emotion and more clarity than the parent and act as a sounding board.
Who can I talk to?
- Social support networks are a network of family, friends and peers who provide support in times when you are faced with stressful situations can provide invaluable, easily accessible support. Unlike a support group, your social support network isn't formalized. You can have a quick talk with your parents, siblings or children, your lunch break friends or office mates that can help you manage stress and talk about your feelings.
- Peer support from people with similar life experiences has proven to be tremendously important in helping move through difficult situations. Peers who have similar life experiences can better relate and consequently offer more authentic empathy and validation, not to mention experience and expertise in similar situations.
- Family Support and Advocacy Organizations can act as mentors; share skills; coordinate events; serve as cultural liaisons; participate in parents meetings; and represent children and families in the development of policy and legislation.
- NY Connects is your trusted place to go for free, unbiased information about long-term supports in New York State for people of all ages or with any type of disability.
- Be willing to accept help.
- Get involved with a peer support group or talk with a family support or advocacy organization.
- Take the first step - reach out to someone. You will be glad you did!
There are many specific ways others can relieve some of the parent's navigational burden. For example:
- Note taking: While you are meeting with professionals, a friend, family member or peer advocate can take notes can help you concentrate on the conversation.
- Interpretation: If English is not your first language, others can lend informal or formal interpretation.
- Moral support: A friend, family member or counselor can help you manage your emotions. They can listen.
- Legal representation: You can ask for protection and advocacy for people with disabilities for legal representation or legal advice.
- Paperwork: Reach out to family members, friends or advocates for help in organizing your paperwork. Being organized from the beginning will result in much less stress through your journey.
- 2-1-1 (3-1-1 in NYC) helps people assess their needs and links them directly to resources that will help.
- NY Connects staff can help link you to long-term services and supports, such as home care, transportation and meals. Their goal is to help individuals live as independently as they wish, while meeting medical, social and functional needs that arise from aging or disability. NY Connects helps individuals, families, caregivers, and professionals.
- Multiple Systems Navigator Family and Peer Support Resources