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

• f 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.

1 2 3 4 Agenda

What do NCI Data show about people in guardianship? One state’s experiences: MO

Presenter:

Jane St. John Training and Development Specialist at the UMKC Institute for Human Development

One state’s experiences: DC

Presenters: Rebecca Salon Program Specialist in the State Office of Policy, Planning and Innovation Aman Sanghera Performance Management Manager in the the State Office of Policy, Planning and Innovation

What is Guardianship?

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
• r sound decisions about his/her person and/or property
• r 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.

Effects of guardianship

• Research on the negative impact of the

imposition of guardianship on the quality

• f 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
• f inadequacy and incompetency”

associated with loss of autonomy and 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)

89.0% 5.5%

0.0% 20.0% 40.0% 60.0% 80.0% 100.0%

41.2% NCI Average

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?

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

Guardianship by race

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

Relationship of the guardian to the person receiving supports

81.6% 71.6% 91.1%

3.1% 3.1% 1.8% 11.2% 18.4% 4.3% 4.1% 6.9% 2.8%

0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% 90.0% 100.0%

White Black Hispanic

Family Friend Public guardian/public administrator Other

Guardianship by diagnosis (co-occurring with ID)

56.4% 37.3% 56.1% 39.3% 48.2% 41.0% 52.1% 41.3% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0%

Severe or profound ID Mild or moderate ID ASD No ASD CP No CP Down syndrome No Down syndrome

Guardianship by residence type

ICF/IID, NURSING FACILITY OR OTHER INSTITUTIONA L SETTING GROUP RESIDENTIAL SETTING (E.G., GROUP HOME) OWN HOME / APARTMENT PARENT’S OR RELATIVE’S HOME FOSTER CARE OR HOST HOME

No Guardianship 5.8% 28.0% 23.9% 38.3% 4.0% Guardianship (limited, full,

• r unknown

level) 5.8% 31.9% 13.3% 42.5% 6.6%

Employment

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

Input in choices, by guardianship

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

Summary

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

• 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