Presentation on theme: "Presented by: Franklin Barbosa, Samuel Bryson-Brockmann,"— Presentation transcript:
1 Caring for People with Developmental Disabilities amidst the Waitlist Crisis Presented by:Franklin Barbosa,Samuel Bryson-Brockmann,Janelle Hoffman, and Kyle SmithPrepared for PSCI 12: Public Policy and AdministrationA Community-Based Learning Course at Drew UniversityIn Partnership with the United Way of Northern New Jersey, Morris CountyMay 2011
2 Developmental Disabilities “Severe, chronic physical and/or mental impairment thatManifests in the developmental years, before age 22;Is life-long; andSubstantially limits you in three of the following life activities: self-care, learning, mobility, communication, self-direction, economic self sufficiency, and the ability to live independently.”
3 The WaitlistNew Jersey Department of Human Services Division of Developmental DisabilitiesWaitlist for residential placement and funding for servicesApproximately 8,000 people currently on the waitlistOnly about 100 people reach the top of the waitlist each yearUW: How could state policy more effectively assist these individuals and their families which care for them?
4 Changes in the Waitlist Previously called the “Residential Waiting List”Name recently changed to “Waiting List for Services”Composed of “Priority,” “Priority Deferred,” and “General”If your needs change after you begin receiving services, you will be reassessed.
5 Types of Residential Placement Developmental CenterIsolated living environmentEx: psychiatric hospitalsCommunity Residential SettingGreater access to the communityEx: group homes
6 The Olmstead RulingTwo Georgia women were being held in an institution even though they wanted to live in a community setting and were able to live in a such a settingCourt Ruling:Holding people in institutions unnecessarily is a violation of the Americans with Disabilities ActStates must provide care for people with DD in the “least restrictive environment possible”
7 New Jersey’s Implementation of OImstead Third highest institutionalization rate in the country1998: “A Plan to Eliminate the Waiting List for Community Residential Services by 2008” was created to implement OlmsteadFailedWaitlist doubled in length2007: “Path to Progress”8-year plan broken into phases434 people have been transitioned under this plan1,005 who desire transitionRecent closings of developmental centers
9 NJ P&A Inc v. Waldman et al Date filed: 1998Case status: ClosedPrimary Target group: Developmentally DisabledCase Type (Olmstead or Related): OlmsteadSummary The state moved 9 people with developmental disabilities & history of violence from group homes to locked state facilities without notice or hearings. Violation of Americans with Disabilities ACTProgress: Settlement. Provides that plaintiffs be moved to appropriate community placements.Significance: First case where the state of New Jersey was challenged on its treatments of institutionalized persons
10 NJ P&A v. Davey Date filed: Sep, 2005 Case status: Open Primary Target group: Developmentally DisabledCase Type (Olmstead or Related): OlmsteadSummary Complaint that people with Developmental Disabilities are unnecessarily institutionalized in publicly operated state developmental centers.Progress Ongoing.Significance: This case caused the governor of New Jersey to require that the DDD come up with a plan to deal with the Olmstead problem (Path to Progress, 2007). It was the first case to challenge the state of New Jersey on its adherence to its Olmstead obligations
11 NJ P&A v. Velez Date filed: Apr, 2008 Case status: Open Primary Target group: Developmentally DisabledCase Type (Olmstead or Related): OlmsteadSummary: Complaint that 8,000 people with disabilities and developmental disabilities have had their rights violated by the state because they have been waiting too long to move into Division-sponsored community housingProgress: The United States Department of Justice has supported DRNJSignificance: Most recent case. First case to challenge the state on its failure to meet the needs of the 8000 people on the wait-list
13 Existing Benefits and Programs Several programs, benefits and services are available from both state and federal agencies to assist in the acquisition and maintenance of care for this afflicted segment of the population.Division of Developmental Disabilities (DDD) offers families a number of training, education and service techniquesServices are often given in place of housing or sometimes in addition to housing
14 Service Plans: Individual Habilitation Plan The purpose of the IHP is to establish goals and objectives that will enable the person with a disability to maximize his or her developmental potential in the least restrictive environment.The IHP also can be used to obtain other types of services such as respite care, family support cash stipends, summer camp stipends, and financial assistance for securing guardianship through a private attorney
15 Service Plans: Essential Lifestyle Plan Used in place of the IHP when an individual chooses “self-directed service options.”Training that is presented for person-centered planning in order to assist in participating and the writing and implementation of the ELP.DDD provides training to families on the ELP planning process in order for them to be active partners in the writing of the ELP
16 Day Programs“One-size fits all” approach is simply not feasible, personal touch neededDDD makes sustained efforts to engage afflicted individuals in communityAdult Day and Vocational Services are designed to provide an opportunity for individuals with developmental disabilities to earn wages or become part of their community through work, volunteerism, and social participationSome of these services include Supported Employment Services, Adult Training Services, Crew Labor Programs, and Extended Employment
17 Residential Placement DDD funds most residential programs for adults with developmental disabilities in New JerseyIncludes a variety of community-based residential programs and residential supports for those in emergent need of housing or incapable of living with family
18 Examples of Residential Placement Skill Development Homes: provide care and training for an individual who lives in the home of a trained provider, and who implements a formal training program developed with and supervised by the DDD case manager.Family Care Homes: similar to skill development homes, but are available for individuals who are more independent than those who reside in skill development homes. The provider offers room, board and supervision.Group Homes: households typically shared by six or fewer individuals. Supervision and training are provided by a house manager and trained staff. Supervision is generally provided around-the-clock.Supervised Apartments: occupied by one or two individuals and monitored by a trained staff person who regularly visits and may live in the same complex. In some unique situations, a supervised apartment may have live-in staff.Supportive Living: refers to arrangements for individuals who receive support services such as training and tutoring, and need access to on-call assistance 24 hours a day
19 Respite ProgramsRespite is care that individuals receive when their parent(s), guardian or other immediate caregiver is temporarily absent or disabled.Respite services may be provided at the provider’s business location or private home, in the home of the individual with developmental disabilities, or in a location approved by the individual or his/her legal guardian
20 Special Needs Housing Trust Fund Special Needs Housing Trust Fund Act of 2005Provides capital financing to create permanent supportive housing and community residences for individuals with special needs, with priority given to individuals with mental illness.Provide alternatives to institutionalization or homelessnessLoans, grants, and investments to eligible not-for- profit and for-profit developers, as well as government entities at the state, county, and municipal levels, for new housing unitsFunded through state taxes
21 Special Needs Housing Trust Fund (cont’d) Expected to provide 10,000 new affordable housing opportunities for people with developmental disabilities and mental illness by dedicating $200 million to create new homes.$168 million has been spent to provide housing to 1,500 people with special needs, according to state officials.84 percent of the money to achieve 15 percent of the goal. The State Department of Community Affairs expects only another 500 units to be created with the remaining money.
22 Supplemental Security Income Designed to provide income supplements to people who are physically restricted in their ability to be employed because of a notable disability, usually a physical disabilityHave a physical or mental condition that prevents them from engaging in any "substantial gainful activity" ("SGA“)The condition is expected to last at least 12 months or result in death, under 65Initial benefits application will take 90 to 120 days, but in practice filings can take up to eight months to complete39 percent of all SSDI applications are approved at the state level
23 Community Care WaiverPays for services and supports to help those with DD live in the communityPaid for by the State and by MedicaidCalled a “waiver” because some rules of Medicaid are waived to pay for the servicesMust be eligible for DDD services and specific Medicaid/Waiver requirements2008: CCW was amended to include people in both at-home and out-of-home settings
24 Organizational Landscape Organizations Advocating, Organizing, and Informing Policy for New Jersey’s Citizens with Developmental Disabilities
25 New Jersey Council on Developmental Disabilities Developmental Disabilities Assistance and Bill of Rights Act of 2000Educate, Advocate, and NavigateMonday Morning, Youth Leadership Project, Family Support, and Partners in Policy MakingFive Year Plan- Employment, education, housing, transportation, health, quality assurance, community supports and cross cutting
26 The ARC of New JerseyProject HIRE, New Jersey Self-Advocacy Project, Education Advocacy, Family Advocacy, Citizen Advocacy, general advocacy, developmentally disabled offenders program, mainstreaming medical care program, and the New Jersey Coalition for the Prevention of Developmental Disabilities.Fiscal Year 2012 Budget RecommendationsDeinstitutionalizationAdvocacy for Community ProvidersRestructuring Community
27 The Elizabeth M. Boggs Center on Developmental Disabilities Both Federally and State fundedHealth, Faith-based, Early Intervention and Education, Community Support, and Developmental Disabilities Policy and Advocacy PublicationsConferences and LecturesResearch and Education
28 Developmental Disabilities Planning Institute Contracted by DDDLife After Johnstone: E.R. Johnstone Research and Training Center in 1992Life After North: North Princeton Developmental Center in 1997Study and inform public policy in DDD
29 United Way Caregivers Coalition Action informed by Coalition MembersPathways for CaregiversAgenda for Action, 2009
31 $10,000 StipendNJDHS proposed a new program to grant $10,000 annually to families with DD childrenMoney could be used to buy services or equipment approved by the StateHas not yet been approved by the federal governmentIf implemented, will likely be much less than $10,000Acknowledgement that the State is unable to meet residential needs
33 Main Problems General lack of funding Unorganized Resources State is currently spending about $264 million annually to operate state-licensed residential homes for people with DDAccommodating everyone on the waitlist would cost over $504 million annuallyUnorganized ResourcesInconsistenciesDifficult to find information; spread out
35 Incentives for Businesses Create a small tax incentive for private organizations to build homes or purchase foreclosed homes and renovate them to make them accessible for people with developmental disabilitiesReach out to non-profits, church groups, private businesses, etc.The state can use Medicaid funds to pay for the care of the individuals placed in the home so that the private organization does not bear any further costs (Cost-effective)A pastor in Somerset County has succeeded in doing this already. Commissioner Velez mentioned this as a good option to pursue
36 Incentives for Businesses (cont’d) Local governments can get involved too:“The Department of Housing and Urban Development is currently holding approximately 39,000 houses whose previous owners held mortgages insured by the federal government. HUD houses go to market about six months after foreclosure. Local governments get the first option to buy. After that, buyers who pledge to live in the house have the first opportunity to offer a bid. If the house is still on the market after a period of about 10 days, the listing is opened to investors. Owner occupants end up with about half of HUD's properties, according to HUD officials” (CNN)These homes can be purchased for cheap by local governments and made into community homes
37 Universities and Medical/Nursing Schools Universities and Medical/Nursing schools can provide dormitory housing, community interaction in a diverse environment, and employment opportunities for people with developmental disabilitiesPsychology departments, medical programs, and nursing programs would benefit greatly from interacting with people with developmental disabilities
38 Universities and Medical/Nursing Schools (cont’d) Mutual gain: People with developmental disabilities are provided with caretakers, community interaction, room & board. Students receive valuable hands-on experience that will benefit them in their future professions
39 Expansion of Respite Care One of most helpful assets offered by the government to aid in care for the developmentally disabledCurrent designations for available locations is too rigid, and could be expanded to be any location that a caregiver would normally be.It would seem inconsistent to not offer respite care to the employment realm, which is often considered to play an integral in being a member of a community.
40 Expansion of Respite Care (cont’d) State laws and regulations are too narrow in defining who can provide respite services.DDD can approve other family members of an afflicted individual to provide respite, they will not pay for any family member, guardian or responsible caregiver who inhabits the same residence as the disabled person.Purpose of respite services is to provide help when the primary caregiver cannot fulfill his or her regular responsibilities for the disabled individualCan still occur even if they live together.
41 Reconstruct Definition of Dev. Centers Limit on the number of beds in a facility to be considered an integrated community settingNumber of beds is not a good indication of the type of settingThis requirement must be redefinedIndicative of other requirements that may need to be reconsidered
42 A Convenient Single Entry System Consolidated information sourceCounty OfficesFull AssessmentAppropriate ReferralDiminish Waiting Lists
43 ConclusionThe waitlist is not meeting the needs of those with developmental disabilitiesThe State has failed to fulfill its promises to these peopleThe State has refused to think outside the box in constructing solutions to what it sees as primarily a funding problem rather than a systemic problemWe propose more creative solutions and more organized resources