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Definition of ID/DD

  1. “Developmental disability” means a severe, chronic disability of an individual that: (1) is attributable to a mental or physical impairment or combination of mental and physical impairments; (2) is manifested before the individual attains age 22; (3) is likely to continue indefinitely; (4) results in substantial functional limitations in 3 or more of the following areas of major life activity: (a) self-care; (b) receptive and expressive language; (c) learning; (d) mobility; (e) self-direction; (f) capacity for independent living; (g) economic self-sufficiency; and (5) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated. 42 U.S.C. § 15002.
  2. “Intellectual disability” means a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18. An intellectual disability is a type of developmental disability. Watch Bethesda Institute’s video below for more information.

What’s Going On at the Federal Level? 

HR 3086 “The Fair Wages for Workers with Disabilities Act of 2011”

This bill would eliminate 14(c) of the Fair Labor Standards Act. By doing so, individuals with the most significant disabilities would be denied the opportunity to work in center-based or community-based employment programs at a wage that reflected their productivity. Eliminating, repealing, or restricting Section 14(c) will simply have the effect of denying the opportunity to work for individuals with the most significant disabilities who cannot meet the productivity standards for competitive employment. Click here to view the National Council on Disability Reports on Subminimum Wage and Supported Employment.

De-funding of Medicaid:

Medicaid has been carved out of the “Sequestration” process which will go into effect on 1-1-13 unless Congress can reach a compromise. Such a deal seems highly unlikely before the election. Nevertheless, there are concerns that after the election, the country will be faced with the “fiscal cliff” when a series of funding and taxation decisions must be made. There is concern that Medicaid cuts will be made before the mandatory Sequestration goes into effect in order to lessen the impact on mandatory cuts, particularly in Defense. There are several options are on the table. 1) Block granting of Medicaid to the states; 2) Arbitrary application of global spending caps well below the current spending levels; and 3) Elimination of the Maintenance of Effort clause that was put into place by the Affordable Care Act.

Changes in the Medicaid Home and Community Based Services (HCBS) Waiver:

Medicaid Home and Community-Based Services (HCBS) waivers afford States the flexibility to develop and implement creative alternatives to placing Medicaid-eligible individuals in hospitals, nursing facilities or intermediate care facilities for persons with mental retardation. The HCBS waiver program recognizes that many individuals at risk of being placed in these facilities can be cared for in their homes and communities, preserving their independence and ties to family and friends at a cost no higher than that of institutional care.

Centers for Medicare and Medicaid Services (CMS) has issued new regulations that we believe would change the existing statute. These regulations address the “settings” in which HCBS could be provided. At its worst, the passage of this new proposed rule could seriously restrict options available to Medicaid beneficiaries. These include across the board time limits on Pre-vocational placements and elimination of or serious restrictions of residential programs such as Group Homes. Our position is that the programs should be person-centered and should honor the person’s choice within a full range of options provided and funded by the state. We feel that this change, if approved, would drastically reduce the number of people with disabilities in employment programs in DE. Read more about the new regulations below:

Final Regulation: 1915(i) State Plan HCBS, 5-Year Period for Waivers, Provider Payment Reassignment, Setting Requirements for Community First Choice, and 1915(c) HCBS Waivers – CMS-2249-F/CMS-2296-F

What’s Going On in the State of Delaware

DelARF Responds to CMS Notice of Proposed Rule Making:

The Delaware Association of Rehabilitation Facilities (DelARF) sent a formal response to CMS regarding their “proposed rulemaking amending Medicaid regulations to establish community setting requirements.” Among other things, the proposed rule would disallow the placement of a program “adjacent to a public institution” and could force states to eliminate longstanding successful community-based programs and certain community-based residential programs (e.g., group homes.)

Community and Choice – Housing Needs for People with Disabilities in Delaware – Work Group Study Report – April 2012

Delaware Housing Coalition and the Housing Sub-Committee of the Governor’s Commission on Community Based Alternatives for People with Disabilities and State Council on Persons with Disabilities released their study results on disability housing options in DE.

Click here to access the full report:

Excerpts from Executive Summary:

“Among the estimated 108,500 people with disabilities in the State of Delaware, incomes are typically lower than among those without disabilities, with a higher overall percentage in poverty or at risk of falling into poverty, and a much higher need for housing assistance. The need for accessible, affordable housing is a major barrier to people with disabilities living in the community, and housing needs severely limit the options of people with disabilities choosing to live in the least restrictive setting of their choice. Independence, choice, and integration are critical and still overlooked issues which must be factored into the consideration of housing needs for people with disabilities.”

“To improve the availability of affordable and accessible housing for people with disabilities in Delaware, the working group offers four broad recommendations:

  • Accessibility: Increase the availability of and access to rental and homeownership opportunities with accessibility features;
  • Affordability: Increase the availability of and access to affordable housing for people with disabilities;
  • Community: Build a community-based system of care with a range of housing options; and
  • Systems: Improve the affordable housing and disabilities services systems that serve people with disabilities.”

Key Facts from the report:

  • There are 36.4 million people with disabilities in the United States, or 11.9% of the population;
  • In Delaware, 12.3% of the population (108,444 Delawareans) is estimated to have a disability.
  • People living in institutions are excluded from these estimates
  • An additional 4,591 people were living in nursing facilities or skilled nursing facilities in Delaware in 2010.
  • Older people are far more likely to have a disability: 31% of individuals 65 or over report one or more disabilities, compared to 11% of those aged 18-64 and 4% of those under 18.
  • People with difficulty completing activities of daily living may need supportive services to assist with these activities. “Self-care difficulty” includes personal care like dressing and bathing, and “Independent Living Difficulty” includes difficulty doing errands alone like shopping or visiting a doctor’s office. In Delaware, an estimated 18,375 people (2.2% of population) have difficulty with self-care and 36,108 (5.4% of population) have difficulty with independent living.
  • In Delaware, as in the nation, there is a universal scarcity of housing assistance for the most vulnerable households. Statewide, approximately 25% of households on public housing authority (PHA) waiting lists for public housing and Housing Choice Vouchers are either elderly or include a person with a disability. There are approximately 25,000 families on PHA waiting lists and waiting lists for privately owned affordable sites.
  • People with Intellectual/Developmental Disabilities (ID/DD) -150 individuals estimated at-risk due to aging caregivers

 

Focus Group Results

Some common items noted in response to a question about what could be done differently in Delaware included:

Increase options – there should be a full continuum of housing opportunities. There is a lack of new

options and housing initiatives in Delaware, and some creative options have not been explored.

Improve coordination among PHAs to benefit consumers, especially unifying and opening waiting lists.

Accessing, getting on and monitoring multiple waiting lists and policies are major challenges.
Aging in Place – Think more broadly and strategically about “aging in place” and increasing general (and

perceived) demand for universally designed/adaptable/visitable homes. We tend to think about it in

terms of helping people remain in the homes they have via modifications and services, but we must also

think about aging in place in terms of creating housing that is designed to facilitate aging in place.
Matching people to units – Managers report that they have difficulty filling accessible units; consumer

advocates report that they cannot access accessible units. Access to real-time information on available

units with accessibility and other detail is needed, as is a steady stream of referrals if units are set-aside.
Transportation – transportation and isolation can be major challenges in more rural areas for group

homes and all community housing situations.

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