Joey's mother Susan tells the story of Joey's experiences in HCBS waiver settings and how the Jennings family managed to get him the care he needs at the White Haven State Center. (Joey's story was featured in the December, 2017 issue of EP - Execeptional Parent Magazine.)

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By Jill Barker

My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant.  We do not love him less because he lives and survives with profound developmental disabilities.

I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, and a supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.  

Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers.  Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day.

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By Harris Capps and Joan Kelley

Sheltered Workshops are private non-profit, state, or local government entities that provide employment opportunities for individuals with disabilities. Persons served in this environment may include those with developmental, physical, and/or mental impairments, ranging from mild to extreme/profoundly affected individuals. Sheltered workshops:

• Provide prevocational training, with the goal to prepare for competitive employment for available jobs in the open labor market
• Emphasize support of individual needs, based on ability to choose work activities that fit with a person’s skills
• Often include additional training in personal care, living skills and developing social skills
• Honor the depth and scope of the DD population, recognizing that some individuals may not ever be able to be competitively employed

After completing a rehabilitation program, many individuals are able to leave the workshop environment and enter regular employment, if there is a job available for which they qualify. Individuals unable to obtain regular employment because of the severity of their impairments or unavailability of jobs can remain in the workshop environment. Individuals performing services are paid a fraction of, or up to minimum wage, depending on their capacity to perform the services. [1]

Issues to Consider Regarding Guardianship and Supported Decision Making

By VOR's Issues and Oversight Committee on Guardianship Rights

Individuals with intellectual and developmental disabilities (I/DD) and their parents, family members and guardians may have heard about Supported Decision-Making (SDM), an initiative that could affect their decision-making rights. Some see SDM as an alternative to guardianship, while others view it as an attempt to remove the legal instrument that provides a safety net for vulnerable individuals.  

VOR is a national organization that advocates for high quality care and human rights for individuals with I/DD. We understand the valuable role that guardians play in the emotional and physical well-being of their wards. As advocates who appreciate the diversity of the I/DD community and the need for a wide array of supports, we want to ensure that guardians and family members are aware of the issues connected to Supported Decision-Making so that they can make informed decisions about the care of their loved one with disabilities.

By Tamie Hopp, VOR Director of Government Relations & Advocacy in Nonprofit Quarterly, July 16, 2014 (and reprinted in the Summer 2014 Nonprofit Quarterly Print edition)

Early reforms were quite properly motivated by the need for a system of care and supports that responded to the very individualized and diverse needs of the entire population of people with I/DD. These reforms, however, also set the stage for decades of ongoing deinstitutionalization, resulting in the elimination of specialized housing, employment and education options for people with I/DD, leaving some to question the price of “progress.”

Policy favoring deinstitutionalization has had a major adverse effect on many individuals, with a shift in funding priorities from Medicaid Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) and other specialized facilities, to smaller service options, such as Medicaid Home and Community-Based Services (HCBS) settings.