View in EDS HTML Full Text PDF Full Text

Formal and Natural Supports: Perspectives From Adults With Intellectual and Developmental Disabilities, Family Members, and Support Workers.

Saved in:
Bibliographic Details
Title: Formal and Natural Supports: Perspectives From Adults With Intellectual and Developmental Disabilities, Family Members, and Support Workers.
Authors: Aldersey, Heather Michelle1 hma@queensu.ca, Xu, Xiaolin1, Piccone, Caitlin1, Nelson, Monique2, Thomson, Donna3, Pauls, Rebecca4, Perry, Linda5
Source: Journal of Policy & Practice in Intellectual Disabilities. Jun2025, Vol. 22 Issue 2, p1-12. 12p.
Subject Terms: *Social workers, *Focus groups, *Government policy, *Communities, *Intellectual disabilities, *Developmental disabilities, *Family attitudes, *Research methodology, *Psychology of caregivers, *Family support, *Interpersonal relations, *People with disabilities, *Caregiver attitudes, Families & psychology, Research funding, Interviewing, Services for caregivers, Human rights, Patients' attitudes
Geographic Terms: China
Abstract: People with intellectual and developmental disabilities and their families often utilize disability‐related supports to navigate their lives in the community. These supports can come from formal (paid) and natural (unpaid) sources. It is important to understand people's experiences navigating both types of supports within the support ecosystem. To that end, we conducted six focus groups (4‐7 participants each) comprising 9 persons with disabilities, 10 family members, and 15 formal support providers to understand the following: (a) What are the experiences of adults with intellectual and developmental disabilities and their family members in engaging with both natural and formal support systems in British Columbia and Ontario, Canada? (b) How might current disability‐related support systems in Canada be improved to better enable adults with intellectual and developmental disabilities and their families to live good lives? Findings indicated the importance of approaching supports from a human rights‐based (rather than a deficit‐based) approach and highlighted the critical importance of relationships and community connections. Findings affirmed that integration of both formal and natural supports is essential, with formal supports often facilitating and enabling natural support networks to flourish. Some participants reflected on how challenging it is to create and maintain natural support networks and believed that much of the work to do this still remains with parents, in spite of efforts to expand circles of support. Finally, findings highlighted systemic barriers and policy hurdles that individuals and families experienced when trying to secure the support they needed and wanted, particularly when transitioning from child to adult formal support systems. We argue that flexibility of government funding, enhancement of community connections, and focus on transition between service systems will be essential in enabling individuals with intellectual and developmental disabilities and their families to live their best lives. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Policy & Practice in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Education Research Complete
Full text is not displayed to guests.
FullText Links:
  – Type: pdflink
Text:
  Availability: 1
Header DbId: ehh
DbLabel: Education Research Complete
An: 186226730
AccessLevel: 6
PubType: Academic Journal
PubTypeId: academicJournal
PreciseRelevancyScore: 0
IllustrationInfo
Items – Name: Title
  Label: Title
  Group: Ti
  Data: Formal and Natural Supports: Perspectives From Adults With Intellectual and Developmental Disabilities, Family Members, and Support Workers.
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Aldersey%2C+Heather+Michelle%22">Aldersey, Heather Michelle</searchLink><relatesTo>1</relatesTo><i> hma@queensu.ca</i><br /><searchLink fieldCode="AR" term="%22Xu%2C+Xiaolin%22">Xu, Xiaolin</searchLink><relatesTo>1</relatesTo><br /><searchLink fieldCode="AR" term="%22Piccone%2C+Caitlin%22">Piccone, Caitlin</searchLink><relatesTo>1</relatesTo><br /><searchLink fieldCode="AR" term="%22Nelson%2C+Monique%22">Nelson, Monique</searchLink><relatesTo>2</relatesTo><br /><searchLink fieldCode="AR" term="%22Thomson%2C+Donna%22">Thomson, Donna</searchLink><relatesTo>3</relatesTo><br /><searchLink fieldCode="AR" term="%22Pauls%2C+Rebecca%22">Pauls, Rebecca</searchLink><relatesTo>4</relatesTo><br /><searchLink fieldCode="AR" term="%22Perry%2C+Linda%22">Perry, Linda</searchLink><relatesTo>5</relatesTo>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="JN" term="%22Journal+of+Policy+%26+Practice+in+Intellectual+Disabilities%22">Journal of Policy & Practice in Intellectual Disabilities</searchLink>. Jun2025, Vol. 22 Issue 2, p1-12. 12p.
– Name: Subject
  Label: Subject Terms
  Group: Su
  Data: *<searchLink fieldCode="DE" term="%22Social+workers%22">Social workers</searchLink><br />*<searchLink fieldCode="DE" term="%22Focus+groups%22">Focus groups</searchLink><br />*<searchLink fieldCode="DE" term="%22Government+policy%22">Government policy</searchLink><br />*<searchLink fieldCode="DE" term="%22Communities%22">Communities</searchLink><br />*<searchLink fieldCode="DE" term="%22Intellectual+disabilities%22">Intellectual disabilities</searchLink><br />*<searchLink fieldCode="DE" term="%22Developmental+disabilities%22">Developmental disabilities</searchLink><br />*<searchLink fieldCode="DE" term="%22Family+attitudes%22">Family attitudes</searchLink><br />*<searchLink fieldCode="DE" term="%22Research+methodology%22">Research methodology</searchLink><br />*<searchLink fieldCode="DE" term="%22Psychology+of+caregivers%22">Psychology of caregivers</searchLink><br />*<searchLink fieldCode="DE" term="%22Family+support%22">Family support</searchLink><br />*<searchLink fieldCode="DE" term="%22Interpersonal+relations%22">Interpersonal relations</searchLink><br />*<searchLink fieldCode="DE" term="%22People+with+disabilities%22">People with disabilities</searchLink><br />*<searchLink fieldCode="DE" term="%22Caregiver+attitudes%22">Caregiver attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Families+%26+psychology%22">Families & psychology</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Services+for+caregivers%22">Services for caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Human+rights%22">Human rights</searchLink><br /><searchLink fieldCode="DE" term="%22Patients'+attitudes%22">Patients' attitudes</searchLink>
– Name: SubjectGeographic
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22China%22">China</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: People with intellectual and developmental disabilities and their families often utilize disability‐related supports to navigate their lives in the community. These supports can come from formal (paid) and natural (unpaid) sources. It is important to understand people's experiences navigating both types of supports within the support ecosystem. To that end, we conducted six focus groups (4‐7 participants each) comprising 9 persons with disabilities, 10 family members, and 15 formal support providers to understand the following: (a) What are the experiences of adults with intellectual and developmental disabilities and their family members in engaging with both natural and formal support systems in British Columbia and Ontario, Canada? (b) How might current disability‐related support systems in Canada be improved to better enable adults with intellectual and developmental disabilities and their families to live good lives? Findings indicated the importance of approaching supports from a human rights‐based (rather than a deficit‐based) approach and highlighted the critical importance of relationships and community connections. Findings affirmed that integration of both formal and natural supports is essential, with formal supports often facilitating and enabling natural support networks to flourish. Some participants reflected on how challenging it is to create and maintain natural support networks and believed that much of the work to do this still remains with parents, in spite of efforts to expand circles of support. Finally, findings highlighted systemic barriers and policy hurdles that individuals and families experienced when trying to secure the support they needed and wanted, particularly when transitioning from child to adult formal support systems. We argue that flexibility of government funding, enhancement of community connections, and focus on transition between service systems will be essential in enabling individuals with intellectual and developmental disabilities and their families to live their best lives. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
  Label:
  Group: Ab
  Data: <i>Copyright of Journal of Policy & Practice in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=ehh&AN=186226730
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/jppi.70011
    Languages:
      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 12
        StartPage: 1
    Subjects:
      – SubjectFull: Social workers
        Type: general
      – SubjectFull: Focus groups
        Type: general
      – SubjectFull: Government policy
        Type: general
      – SubjectFull: Communities
        Type: general
      – SubjectFull: Intellectual disabilities
        Type: general
      – SubjectFull: Developmental disabilities
        Type: general
      – SubjectFull: Family attitudes
        Type: general
      – SubjectFull: Research methodology
        Type: general
      – SubjectFull: Psychology of caregivers
        Type: general
      – SubjectFull: Family support
        Type: general
      – SubjectFull: Interpersonal relations
        Type: general
      – SubjectFull: People with disabilities
        Type: general
      – SubjectFull: Caregiver attitudes
        Type: general
      – SubjectFull: Families & psychology
        Type: general
      – SubjectFull: Research funding
        Type: general
      – SubjectFull: Interviewing
        Type: general
      – SubjectFull: Services for caregivers
        Type: general
      – SubjectFull: Human rights
        Type: general
      – SubjectFull: Patients' attitudes
        Type: general
      – SubjectFull: China
        Type: general
    Titles:
      – TitleFull: Formal and Natural Supports: Perspectives From Adults With Intellectual and Developmental Disabilities, Family Members, and Support Workers.
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Aldersey, Heather Michelle
      – PersonEntity:
          Name:
            NameFull: Xu, Xiaolin
      – PersonEntity:
          Name:
            NameFull: Piccone, Caitlin
      – PersonEntity:
          Name:
            NameFull: Nelson, Monique
      – PersonEntity:
          Name:
            NameFull: Thomson, Donna
      – PersonEntity:
          Name:
            NameFull: Pauls, Rebecca
      – PersonEntity:
          Name:
            NameFull: Perry, Linda
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 06
              Text: Jun2025
              Type: published
              Y: 2025
          Identifiers:
            – Type: issn-print
              Value: 17411122
          Numbering:
            – Type: volume
              Value: 22
            – Type: issue
              Value: 2
          Titles:
            – TitleFull: Journal of Policy & Practice in Intellectual Disabilities
              Type: main
ResultId 1