Children and Families

The Utah Real Choice grant produced “The Caregiver Guide” and they have shared several modules. Topics covered include: Community Supports to Stay at Home, Caring for a family member with mental illness, Hiring and managing personal assistants, Assistive technology, Creating an accessible home, and Caring for a child with special needs. Modules are also available in Spanish.

The following two reports are the result of face-to-face and mailing surveys to evaluate user experiences. The face-to-face surveys were conducted with people who are 18 years of age and older who receive Medicaid waiver or Intermediate Care Facilities for Persons with Mental Retardation (ICF/MR) Program Services. The Children/Family Surveys were mailed to families of children under 18 years of age who received services in programs operated by the Department in 2005.

This study was conducted as part of the Nebraska Nursing Facility Transition (NFT) Grant. The target population included children living in nursing facilities who meet the criteria for transition to home and community-based settings and children living at home identified as at-risk for nursing facility placement. The goals of this paper were to decrease the number of children in nursing facilities, identify risk factors, and to develop a plan to keep children in home and community settings.

The Consumer-Directed Supports Toolbox is a set of materials developed under the Community-Integrated Personal Assistance Services and Supports (CPASS) grant awarded to North Carolina in 2002. It was developed to support the implementation of consumer-directed options in North Carolina. The “toolbox” consists of 3 powerpoint presentations, a set of exercises to be used in conjunction with the powerpoints, a consumer-directed supports manual, brochures and other visual aids.

A goal of the Maryland Real Choice grant was to “provide information and assistance to consumer in acute care hospitals to aid decision-making and assist with transitions back to the community.” In 2003, a hospital discharge initiative was used to pay for nurses to work with patients being discharged from acute-care hospital stays. This paper reviews and answers whether there has been any change in discharge patterns from pilot sites to nursing homes relative to the rest of the state.

The Consumer Planning and Implementation Group (CPIG) was formed as a way to include consumers in the Real Choice Systems Change grant activities. CPIG represents consumers across disability, age, ethnicity, geographic locations, and include community advocates/providers. CPIG provides input on grant activities and provides recommendations to the Collaborative Team (consumers and representatives for Massachusetts’ Real Choice and Independence Plus grants).

When accessing health care for children there is another level of advocacy and information needed. Learning to advocate, learning to research and learning how to communicate with multiple systems are all skills to be acquired. Many times families are asked to “Put your request in writing”; for the parents of children with disabilities, there are even more reasons. The New York F2F grantee developed this booklet with hints, suggestions or models for families to use when writing letters.

In September 2004, Minnesota’s Real Choice Systems Changes grantees presented at the Illinois 2004 Systems Change Seminar. Presentations covered the Minnesota’s Personal Assistance Care Program, QA/QI grant, ADRC grant, and its Senior Health Insurance Program. A variety of topics covered include quality assurance, stakeholder involvement and personal assisted services

The following information was presented at the Illinois 2004 Systems Change Seminar. Topics presented included: trends in long-term care, progress on the Illinois Community-based Treatment Alternatives for Children (CTAC) grants, the Illinois Housing Development Authority and how its work pertains to persons with disabilities, and Michigan’s progress on its Real Choice Systems Change grants.

Community Service Options, Inc (CSO) is an organization dedicated to assisting persons with developmental disability to receive service and live in the “least restrictive” setting. CSO provides screening, eligibility assessment, service coordination, and advocacy throughout the Chicago area. The website provides links to their services and assessment tools.