Self-Advocate Health Care Survey STATEMENT OF INFORMED CONSENT       Please read the following information.   Reason for the research project: The Arc of Massachusetts is completing a research project to learn about how people with intellectual and/or developmental disabilities get the medical help they need in Massachusetts.  The Boston Foundation has funded this project.   What we are asking you to do: We would like for you to answer eight questions about your medical care.  It should take you about 15 minutes to answer the eight questions.  You will be asked about how you get the medical care you need, communication between you and the person who takes care of your medical needs, the quality of care you receive from the person who takes care of your medical needs and if you have suggestions for creating a better way to get the medical care you need.  There is no right or wrong answers to these questions -- we want to hear your thoughts and ideas.    You must be at least 18 years old to take part in this online survey.   There are not risks to you for taking part in this online survey.   Benefits to you: There are no direct benefits to you for taking part in this online survey.  However, your answers will help us to learn more about how families are getting health care for their sons/daughters who has an intellectual and/or developmental disability.   Voluntary participation/ withdrawal: You do not have to take part in this survey if you do not want to.    Compensation: You will not get any money for taking part in this online survey.   Protection of privacy: Your answers will be anonymous. This means no one will know if you took part in this study and no one, including the researcher, will know what your answers are.  Any reports or publications based on this research will use only group data and will not identify you or any individual as being of this project.   You will not be asked your name or any other identifying information.   The decision to participate in this research project is up to you. You do not have to participate and you can refuse to answer any question.   Contact person: If you have any questions after you have completed the focus group, please contact the Project Director, Mandy Nichols, at The ARC of Massachusetts. her number is 781-891-6270 extension 107.   If you agree to participate in this online survey, please click the link below.  Thank you!   I agree, take me to the self-advocate survey >>

Health Care Survey for Parents/Guardians STATEMENT OF INFORMED CONSENT     Please read the following information.   The purpose of the research project:     The Arc of Massachusetts is conducting a research project in order to learn about how people with intellectual/developmental disabilities access the medical help they need in Massachusetts.  The Boston Foundation has funded this project.   What we are asking you to do: We would like for you to answer six questions about the medical care your son/daughter receives.  It should take you about 15 minutes to answer the six questions.  You will be asked about how medical staff members communicate with your son/daughter, the quality of care your son/daughter receives from the person who takes care of their medical needs and suggestions to improve the medical care for people with intellectual/developmental disabilities receive.   There are not risks to you for taking part in this online survey.   Benefits to you: There are no direct benefits to you for participating in this online survey.  However, your answers will help us to learn more about how families are accessing health care for their son/daughter who has an intellectual/developmental disability.   Voluntary participation/ withdrawal: You do not have to participate if you do not want to.    Compensation: You will not receive any money for taking part in this online survey.   Protection of privacy: Your answers will be anonymous. This means no one will know your name, including the researcher, and no one will know your answers.  Any reports or publications based on this research will use only group data and will not identify you or any individual as being a part of this project.   The decision to participate in this research project is up to you. You do not have to participate and you can refuse to answer any question.   Contact person: If you have any questions after you have completed the focus group, please contact the Project Director, Mandy Nichols, at The ARC of Massachusetts. Her number is 781-891-6270 ext. 107.    If you agree to participate in this online survey, please click the link below.  Thank you!   I agree, take me to the parent/guardian survey >>

Health Care Survey for Professionals STATEMENT OF INFORMED CONSENT   NOTE: "Professionals" include mid-level managers / senior staff members, nurses, and state agency personnel of long-term support who can speak of recipients' experiences while accessing quality health care.   Please read the following information.   The purpose of the research project:     The Arc of Massachusetts is conducting a research project in order to learn about how people with intellectual/developmental disabilities (ID/DD) access the medical help they need in Massachusetts.  The Boston Foundation has funded this project.   What we are asking you to do: We would like for you to answer seven questions about how individuals with intellectual/developmental disabilities access health care.  When answering the questions, we would like for you to share your professional knowledge and experiences. It should take you about 15 minutes to answer the six questions.  You will be asked about your role at medical appointments, communication between adult patients and medical staff and suggestions for improving the medical care people with intellectual/developmental disabilities receive.   There are not risks to you for taking part in this online survey.   Benefits to you: There are no direct benefits to you for participating in this online survey.  However, your answers will help us to learn more about individuals with intellectual/developmental disabilities are accessing health care.   Voluntary participation/ withdrawal: You do not have to participate if you do not want to.    Compensation: You will not receive any money for taking part in this online survey.   Protection of privacy: Your answer will be anonymous. This means no one will know your name, including the researcher, and no one will know your answers.  Any reports or publications based on this research will use only group data and will not identify you or any individual as being a part of this project.   The decision to participate in this research project is up to you. You do not have to participate and you can refuse to answer any question.   Contact person: If you have any questions after you have completed the focus group, please contact the Project Director, Mandy Nichols, at The ARC of Massachusetts. Her number is 781-891-6270 ext. 107.   If you agree to participate in this online survey, please click the link below.  Thank you.   I agree, take me to the survey for professionals >>