Supporting - Educating - Advocating
Support Systems
Help and Support
Know that you are not alone! There is a whole community here to help and many ways for you to connect and get the support you need.....
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SUPPORT FOR THE WHOLE FAMILY
Noonan syndrome (NS) impacts every member of the family, not just the person with the syndrome. This section is dedicated to the siblings, parents and other family members of people with NS and their need for understanding, information and support. Following are some resources to help build a support structure, including online groups, guidelines for teens and adults, early intervention, and pediatric nursing services.
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There is a vast and lively community of parents on our Facebook Group. This online support group is there for parents and individuals to ask questions, get answers, find hope and to make new friends!
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REGIONAL EVENTS
There will be RASopathies family picnic event held October 1 in Cincinnatio, Ohio. Click here for more information.
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EARLY INTERVENTION
Early Intervention (EI) is a support system for children with developmental disabilities or delays and their families. The mission of EI is to ensure that families who have children, ages birth to three, with diagnosed disabilities, developmental delays or substantial risk of significant delays receive resources and supports that assist them in maximizing their child's development.
http://nichcy.org/​babies/​overview
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NURSING CARE
It is important to get the help you need, when you need it. Please, do not rely on hospital staff to give you accurate information on pediatric nursing care options for your family. Instead, call Pediatric Services of America (PSA), Loving Care Agency or another reputable pediatric nursing care company in your area and ask them to come out to your house for a consultation. These agencies will call your insurance company and then explain your options to you. Another option is a day care center for medically fragile children. Some nursing care agencies and Easter Seals locations are now offering day care centers for medically fragile children.
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*The text preceding is for informational purposes only. The Foundation does not endorse any one organization and/or company.
http://www.lovingcareagency.com
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TEEN & ADULT OPTIONS
Teens and adults with Noonan syndrome (NS) may be faced with many challenges as they strive for independence and explore their options. It’s important for each of us to discover who we are, what our needs are and what choices are available. Because an individual is challenged with a disability does not mean that his or her needs are any different than other teenagers and adults. Everyone needs goals to reach for and a plan to achieve those goals. A transitional plan is a guide for individuals. The plan must include goals and services needed, based on the individuals needs, preferences and skills. The transition process is a complex one with many decisions to be made.
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In conclusion, a student with a disability can increase her or his options by having a good transitional plan. The plan must involve the parents and the student, school officials and community agencies that can help facilitate a smooth passing from one phase of life to the next.
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COLLEGE, CAREER & VOCATIONAL CHOICES
Career choices for individuals with disabilities are more plentiful today than any other time in our history. The career path begins in high school by selecting the courses that match your future goals. While education beyond high school in the U.S. is optional, it has become a necessary investment in future employment and life satisfaction for many people. Over the years, public and private sources of money have been developed specifically to meet this need. College bound students with disabilities may qualify for financial aid through both federal and state programs.
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The needs of individuals with disabilities mirror the needs of people in the general community; however, people with disabilities usually have needs that go beyond the normal services provided for the non-disabled individual. They may need unique, specialized supportive services that are provided through state and federal programs. These types of programs provide the disabled individual with expanded access to employment and vocational rehabilitation services, and other related services. The intent of the programs is to enable the beneficiaries to obtain, regain or maintain employment and to reduce their dependency on cash assistance in the future.