Caring for People with Developmental Disabilities amidst the Waitlist Crisis

Presented by:Franklin Barbosa, Samuel Bryson-Brockmann, Janelle Hoffman, and Kyle Smith

Prepared for PSCI 12: Public Policy and AdministrationA Community-Based Learning Course at Drew University

In Partnership with the United Way of Northern New Jersey, Morris County

May 2011

Developmental Disabilities

•“Severe, chronic physical and/or mental impairment that▫Manifests in the developmental years,

before age 22;▫Is life-long; and▫Substantially 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.”

The Waitlist• New Jersey Department of Human Services

Division of Developmental Disabilities • Waitlist for residential placement and funding

for services• Approximately 8,000 people currently on the

waitlist• Only about 100 people reach the top of the

waitlist each year• UW: How could state policy more effectively

assist these individuals and their families which care for them?

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.

Types of Residential Placement

•Developmental Center▫Isolated living environment▫Ex: psychiatric hospitals

•Community Residential Setting▫Greater access to the community▫Ex: group homes

The Olmstead Ruling

•Two 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 setting

•Court Ruling:▫Holding people in institutions

unnecessarily is a violation of the Americans with Disabilities Act

▫States must provide care for people with DD in the “least restrictive environment possible”

New Jersey’s Implementation of OImstead

• Third highest institutionalization rate in the country

• 1998: “A Plan to Eliminate the Waiting List for Community Residential Services by 2008” was created to implement Olmstead▫Failed▫Waitlist doubled in length

• 2007: “Path to Progress”▫8-year plan broken into phases▫434 people have been transitioned under this plan▫1,005 who desire transition

• Recent closings of developmental centers

Court Cases Involving Olmstead

NJ P&A Inc v. Waldman et al• Date filed: 1998• Case status: Closed• Primary Target group: Developmentally Disabled• Case Type (Olmstead or Related): Olmstead• Summary 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 ACT

• Progress: 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

NJ P&A v. Davey• Date filed: Sep, 2005• Case status: Open• Primary Target group: Developmentally Disabled• Case Type (Olmstead or Related): Olmstead• Summary 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

NJ P&A v. Velez• Date filed: Apr, 2008• Case status: Open• Primary Target group: Developmentally Disabled• Case Type (Olmstead or Related): Olmstead• Summary: 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 housing

• Progress: The United States Department of Justice has supported DRNJ

• Significance: Most recent case. First case to challenge the state on its failure to meet the needs of the 8000 people on the wait-list

Existing Benefits and Programs

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 techniques

• Services are often given in place of housing or sometimes in addition to housing  

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

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

Day Programs• “One-size fits all” approach is simply not feasible,

personal touch needed• DDD makes sustained efforts to engage afflicted

individuals in community• Adult 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 participation

• Some of these services include Supported Employment Services, Adult Training Services, Crew Labor Programs, and Extended Employment   

Residential Placement

•DDD funds most residential programs for adults with developmental disabilities in New Jersey

•Includes a variety of community-based residential programs and residential supports for those in emergent need of housing or incapable of living with family

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

Respite Programs

•Respite 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

Special Needs Housing Trust Fund• Special Needs Housing Trust Fund Act of 2005 • Provides 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 homelessness

• Loans, 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 units

• Funded through state taxes

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.

• 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 disability

• Have 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 65

• Initial benefits application will take 90 to 120 days, but in practice filings can take up to eight months to complete

• 39 percent of all SSDI applications are approved at the state level

Supplemental Security Income

Community Care Waiver

•Pays for services and supports to help those with DD live in the community

•Paid for by the State and by Medicaid•Called a “waiver” because some rules of

Medicaid are waived to pay for the services

•Must be eligible for DDD services and specific Medicaid/Waiver requirements

•2008: CCW was amended to include people in both at-home and out-of-home settings

Organizational LandscapeOrganizations Advocating, Organizing, and Informing Policy for New Jersey’s Citizens with Developmental Disabilities

New Jersey Council on Developmental Disabilities

•Developmental Disabilities Assistance and Bill of Rights Act of 2000

•Educate, Advocate, and Navigate•Monday Morning, Youth Leadership

Project, Family Support, and Partners in Policy Making

•Five Year Plan- Employment, education, housing, transportation, health, quality assurance, community supports and cross cutting

The ARC of New Jersey• Project 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 Recommendations• Deinstitutionalization • Advocacy for Community Providers • Restructuring Community

The Elizabeth M. Boggs Center on Developmental Disabilities•Both Federally and State funded•Health, Faith-based, Early Intervention

and Education, Community Support, and Developmental Disabilities Policy and Advocacy Publications

•Conferences and Lectures•Research and Education

Developmental Disabilities Planning Institute

•Contracted by DDD•Life After Johnstone: E.R. Johnstone

Research and Training Center in 1992 •Life After North: North Princeton

Developmental Center in 1997•Study and inform public policy in DDD

United Way Caregivers Coalition•Action informed by Coalition Members•Pathways for Caregivers•Agenda for Action, 2009

Recent Proposal

$10,000 Stipend•NJDHS proposed a new program to grant

$10,000 annually to families with DD children•Money could be used to buy services or

equipment approved by the State•Has not yet been approved by the federal

government• If implemented, will likely be much less than

$10,000•Acknowledgement that the State is unable to

meet residential needs

Diagnosis

Main Problems

•General lack of funding▫State is currently spending about $264

million annually to operate state-licensed residential homes for people with DD

▫Accommodating everyone on the waitlist would cost over $504 million annually

•Unorganized Resources▫Inconsistencies▫Difficult to find information; spread out

Recommendations

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 disabilities

• Reach 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

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

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 disabilities

•Psychology departments, medical programs, and nursing programs would benefit greatly from interacting with people with developmental disabilities

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

Expansion of Respite Care•One of most helpful assets offered by the

government to aid in care for the developmentally disabled

•Current 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.

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 individual

• Can still occur even if they live together.

Reconstruct Definition of Dev. Centers

•Limit on the number of beds in a facility to be considered an integrated community setting

•Number of beds is not a good indication of the type of setting

•This requirement must be redefined•Indicative of other requirements that may

need to be reconsidered

A Convenient Single Entry System•Consolidated information source•County Offices•Full Assessment •Appropriate Referral•Diminish Waiting Lists

Conclusion

•The waitlist is not meeting the needs of those with developmental disabilities

•The State has failed to fulfill its promises to these people

•The State has refused to think outside the box in constructing solutions to what it sees as primarily a funding problem rather than a systemic problem

•We propose more creative solutions and more organized resources