National Core Indicators Sarah Taub Webinar Series: Guardianship - PowerPoint PPT Presentation

National Core Indicators™ Sarah Taub Webinar Series: Guardianship July 23, 2019

Sarah Taub Sarah Taub was the National Core Indicators Director until 2013 when her life what cut short by an aggressive cancer. Her sense of mission and purpose was an essential part of the growth of NCI to the prominence it has today. She was a fierce advocate for people with disabilities, and for their representation at all levels in the work we do. She never let us forget the people behind the numbers.

Agenda 1 2 3 4 One state’s What is What do NCI Data One state’s experiences: DC Guardianship? show about people experiences: MO in guardianship? Presenters: Presenter: Rebecca Salon Program Specialist in the State Office of Policy, Jane St. John Planning and Innovation Training and Development Aman Sanghera Specialist at the UMKC Performance Management Institute for Human Manager in the the State Development Office of Policy, Planning and Innovation

WH WHAT IS T IS GUARDIANSHIP? ARDIANSHIP? This Photo by Unknown Author is licensed under CC BY

What is a guardian? • A guardian is a person, institution, or agency appointed by a court to manage the affairs and interests of another individual. • The National Guardianship Association (NGA) suggests that the most prudent use of guardianship occurs • “when a person can no longer make or communicate safe or sound decisions about his/her person and/or property or has become susceptible to fraud or undue influence.” • Guardian may make decisions on: • Where to live, health treatment or medical care • Financial matters, benefits, real estate and other property • Limited guardianship: certain decisions/legally binding agreements

The NGA recommends guardians practice with the “highest allegiance to the person.” • The decision to place someone under guardianship is most often motivated by a desire to protect the interests of the individual with a disability • but the consequences for that individual may be profound. • When a guardian’s decision substitutes for that of the individual with IDD, the following losses may result: • People may not be included in conversations where important decisions are made about their lives; • People don’t develop the skills necessary to participate in decisions (e.g., individual service plan) because they must rely on others; • When they want to make a purchase, get married, open a bank account or enter into a legal agreement, people must ask permission; • They are deprived of the “dignity of risk”; • Doctors, dentists and other medical professionals may not include the person in any treatment planning. Crane, S. (2018). Supported decision making. Power Point Presentation to the Alliance for Citizen Directed Supports.

• Research on the negative impact of the imposition of guardianship on the quality of life of the individual indicates: • A person is denied the ability to be a causal agent in his/her life and often “feels helpless, hopeless, and self - critical”; • “Low self -esteem, passivity and feelings Effects of of inadequacy and incompetency” associated with loss of autonomy and guardianship self-determination also result in decreased functioning; • Being subject to guardianship may affect subjective well-being including physical and mental health. Deci, E. (1975). Intrinsic motivation. New York, NY: Plenum Press. Winick, B. (1995). The side effects of incompetency labeling and the implications for mental health law. Psychology, Public Policy and Law , 1 (1), 6 – 42. http://dx.doi.org/10.1037//1076-8971.1.1.6 Wright, J. (2010). Guardianship for your own good: Improving the well-being of respondents and wards in the USA. International Journal of Law and Psychiatry , 33 (5 – 6), 350 – 368. http://dx.doi.org/10.1016/j.ijlp.2010.09.007

WHAT T DO DO NCI DATA A REV EVEAL EAL ABO BOUT UT THE E GU GUARDIAN RDIANSHIP SHIP STATUS TUS OF OF PEO EOPLE LE WITH IDD? DD? This Photo by Unknown Author is licensed under CC BY-SA

Percentage of respondents with guardianship by state (Full, limited or unknown level) 100.0% 89.0% 80.0% 60.0% 40.0% 41.2% NCI Average 20.0% 5.5% 0.0% All relationships shown in this presentation are significant at the p<=.001 level. Data are not weighted. Total sample: 25,671 respondents from 36 states including DC. Averages are averages of cases (not averages of state averages).

Of those with guardianship, who serves as guardian? 100.0% 90.0% 81.3% 80.0% 70.0% 60.0% 50.0% 40.0% 30.0% 20.0% 11.3% 10.0% 3.0% 2.2% 1.2% 0.0% Family member Friends Public guardians Non-profit guardianship Financial institutions, For- agency profit guardianship agency or Other

Guardianship by race White 46.4% Black 34.2% Hispanic 26.3% 0.0% 5.0% 10.0% 15.0% 20.0% 25.0% 30.0% 35.0% 40.0% 45.0% 50.0%

Relationship of the guardian to the person receiving supports 100.0% 91.1% 90.0% 81.6% 71.6% 80.0% 70.0% 60.0% 50.0% 40.0% 30.0% 18.4% 20.0% 11.2% 6.9% 4.1% 4.3% 10.0% 3.1% 3.1% 2.8% 1.8% 0.0% White Black Hispanic Family Friend Public guardian/public administrator Other

Guardianship by diagnosis (co-occurring with ID) 60.0% 56.4% 56.1% 52.1% 50.0% 48.2% 41.3% 41.0% 39.3% 40.0% 37.3% 30.0% 20.0% 10.0% 0.0% Severe or Mild or ASD No ASD CP No CP Down No Down profound moderate syndrome syndrome ID ID

Guardianship by residence type ICF/IID, GROUP OWN HOME PARENT’S OR FOSTER NURSING RESIDENTIAL / RELATIVE’S CARE OR FACILITY OR SETTING (E.G., APARTMENT HOME HOST OTHER GROUP HOME) HOME INSTITUTIONA L SETTING No 5.8% 28.0% 23.9% 38.3% 4.0% Guardianship Guardianship (limited, full, 5.8% 31.9% 13.3% 42.5% 6.6% or unknown level)

Employment 100.0% 90.0% 80.0% 70.0% 60.0% 50.0% 40.0% 33.2% 26.0% 30.0% 17.7% 20.0% 13.8% 10.0% 0.0% Guardianship No guardianship Paid communioty job Job goal in ISP

Input in choices, by guardianship 100.0% 93.5% 89.1% 89.2% 88.1% 90.0% 82.2% 79.9% 80.0% 69.3% 70.0% 65.0% 63.8% 60.5% 60.0% 53.4% 52.5% 49.0% 50.0% 38.4% 40.0% 30.0% 20.0% 10.0% 0.0% Where to live With whom to live Their support staff Their schedule What to do in free Day activity What to buy with time spending money Guardianship No guardianship

Respondents with guardians are less likely to: • Live in their own homes or apartments and are more likely to live in group homes • Be involved in making choices about their lives Summary • Be included in their community • Have their rights respected • Have community jobs or service plans with this goal • Be supported to communicate with friends • Be able to go on dates • Be married