Special Needs

NAELA Public Policy Priority 2013-2014: Special Needs Trust Fairness Act

NAELA Public Policy Guidelines

I. TRUSTS
NAELA supports the utilization of trusts that support beneficiaries with special health care needs based on disability. NAELA affirms the need for the following trusts as a way to enhance the quality of life of beneficiaries who have special healthcare needs.

A. NAELA supports the utilization of Third Party Trusts and laws that encourage special needs protection.

B. NAELA supports the utilization of Self Settled Trusts, including the right of the beneficiary to establish the trust. NAELA advocates for the interpretation of laws in a manner that allows special needs protection. NAELA supports confirmation of the tax status of Self Settled Trusts as grantor trusts.

C. NAELA supports the utilization of Pooled Trusts and encourages their utilization. NAELA believes there should be reimbursement to an organization that administers the trust.

D. NAELA supports federal law and regulations that prohibit state Medicaid agencies from creating legislation or regulations that allow a state to invade, limit distributions, or otherwise count the assets or income of a special needs trust for a state-administered program in excess of the statutory authority allowed under Title XVI and Title XIX of the Social Security Act and federal regulation.

II. BENEFITS
NAELA supports the provision of a broad array of benefits and services that provide income and health security for persons with disabilities of all ages. The current scope of benefits includes Social Security Disability Insurance, Supplemental Security Income, Medicaid and Medicare. It is important that these programs work well in serving the diverse needs of persons with disabilities and that program coordination is smooth and responsive to the individual needs of beneficiaries.

A. Social Security Disability Insurance and Supplemental Security Income
NAELA supports the principle that the Social Security Disability Insurance (SSDI) and the Supplemental Security Income (SSI) programs are an integral source of income and health security for low-income elderly and disabled persons.

1. NAELA urges that proposals to promote employment for persons with disabilities do not threaten necessary income supports for individuals with disabilities, particularly for persons who rely on cash-based benefit programs for their basic subsistence.

2. NAELA supports initiatives that promote employment among SSDI and SSI disability beneficiaries that first and foremost “do no harm,” that increase the capacity for employment, and that ensure access to effective supports.

3. NAELA opposes proposals that include mandatory work requirements as a condition of receiving SSDI and SSI disability benefits, including community service, volunteer work, vocational rehabilitation, training, or other pre-employment activities.

4. NAELA supports improvements in the process for determining disability, that ensure the protection of a claimant’s due process rights, including representation by competent counsel, and that provide claimants with the right to a full and fair administrative hearing by an independent and impartial decision maker.

5. NAELA supports proposals that increase administrative simplification for eligibility and receipt of SSDI and SSI benefits, including eligibility rules, application processes, redeterminations and all phases of the appeals process. NAELA supports an SSI and SSDI eligibility determination process where a claimants’ past and present medical condition and functional capacity are supported by evidence that meets or exceeds medical or other clinically accepted standards and practice guidelines.

6. NAELA supports a disability evaluation procedure that allows reasonable weight to be given to any verifiable mental or physical condition, or combination of conditions, including subjective complaints, which significantly reduces an individual’s residual mental and/or physical capacity to perform substantial gainful activity in the competitive workplace.

7. NAELA supports and encourages the Social Security Administration to make use of the most current electronic medical records technology in the collection, storage, and disclosure of SSI and SSDI beneficiaries’ records. Similarly, NAELA encourages SSA to employ records collection and storage systems that pay strict adherence to federal and state privacy laws and regulations.

8. NAELA believes that the substantial gainful activity (SGA) income levels for SSDI/SSI/Medicaid should be the same for people with other disabilities as it now is for people who are blind.

9. Impairment -related work expense allowances for SSDI/SSI/Medicaid should be the same for people with other disabilities as they now are for people who are blind.

10. SSDI should have protections equivalent to Section 1619 of the Social Security Act, which allow SSI recipients to work but retain SSI/Medicaid eligibility status indefinitely, without regard to whether the person is working in substantial gainful activity.

11. NAELA supports the annual adjustment of SSI non-countable income and resource allowances.

B. Medicare
NAELA supports the elimination of the 24-month waiting period for the eligibility of individuals under the age of 65 to receive Medicare coverage upon becoming eligible for payment of Social Security Disability Insurance benefits.

C. Medicaid

1. NAELA believes that services available under the Medicaid program must be sufficient to meet the needs of persons with special or chronic needs, including a full range of health and long-term services for disabled persons of all ages.

2. NAELA believes that the Medicaid program should eliminate its historic “institutional bias” by maximizing the availability of community-based services.
From a starting point, the income cap and service limitations in Medicaid’s home and community-based services state plan benefit should be eliminated.

3. NAELA supports the expansion of provisions in Medicaid law that make funds available to consumers to purchase necessary services. These expansions should assure that consumers and their families have flexibility in the range of services and vendors that they may consider when purchasing services, thus allowing consumers and their families to exercise control over how best to meet their individual needs.

D. SSI and Medicaid

1. NAELA believes that all states’ Medicaid programs should allow Medicaid Purchase Plans (MAPPs) which allow people with disabilities to buy into Medicaid while working. MAPPS should include provisions that:

a. Provide substantially higher SSI resource limits for persons who are working.
b. Exclude from countable resources savings from work and retirement benefits earned while under a disability.
c. Disregard as income all increases in public benefits which result from work while under a disability.
d. Include a retirement status for people who have participated in work incentive programs, including SSI work incentives under Section 1619 (b) of the Social
Security Act and under Medicaid purchase plans, so that resource exclusions for savings from work continue, and so that retirement income is treated as earned income for purposes of computing any premium.
e. Exempt transfers of earned income, and savings from earned income.
f. Exempt retirement benefits and savings from earned income from estate recovery.

III. PROMOTION OF INDEPENDENT LIVING
NAELA supports the expansion of public and private care options that keep individuals in the
community and promote functional independence at the highest possible level.

A. Expansion of Community Services
NAELA supports the development and expansion of community-based services such as special waivers under the Medicaid program and under various programs operated by the Centers for Medicare and Medicaid Services (CMS) such as “Money Follows the Person programs.” These services should be made available on a basis that does not discriminate against community-based recipients and in favor of institution-based services.

B. Direct Care Personnel
NAELA supports programs that promote independent living for individuals with disabilities. NAELA also supports the elimination of barriers to independence such as (a) the shortage of trained individuals to provide attendant care to individuals living in the community; (b) inadequate training for attendant care workers; and (c) insufficient wage compensation for attendant care workers (e.g., services and supports available under the Older Americans Act such as the National Family Caregiver Support Program and Aging and Disability Resource Centers).

1. NAELA recognizes and supports the central role families and other informal caregivers play in the care of individuals with disabilities who live in the community.

2. NAELA encourages the development of Family Support systems by allowing payment to family members as caregivers under Medicaid waiver programs.

3. NAELA supports allocation of funds to develop and provide technology that fosters independence.

C. Transportation
NAELA believes that without accessible and affordable transportation, people with disabilities cannot fully participate in life. NAELA supports the following:

1. Development and continued funding of accessible public transportation.

2. Federal standards that increase the number of taxis that are wheelchair accessible and the development and adoption of minimum standards for universal accessible design of all taxicabs to help provide equal access to means of private transportation for individuals with special needs.

IV. HOUSING
NAELA believes that safe, affordable, integrated, supported and accessible housing should be not only mandated for but also readily available to people with disabilities. Local, state and federal agencies should do more to make accessible housing available to this population segment.

A.Accessibility/Accessible Design
NAELA supports enacting legislation that requires all newly constructed, federally assisted housing to incorporate design elements that afford access to a dwelling without use of stairs and incorporate accommodation of diverse disabilities.

B. Housing Benefits
NAELA encourages broad support for Public Housing Programs, including federal voucher programs for persons with disabilities, as well as programs that promote supported independent living and home ownership programs for qualified persons with disabilities. NAELA also supports laws for public housing programs that count payments from income from third-party and self-settled special needs trusts that are no more restrictive than currently allowed under the Title XIX/Medicaid statute.

C. Fair Housing
NAELA opposes efforts to limit housing options, including efforts to weaken fair housing protections.

D. Olmstead Community Integration Mandate
NAELA supports the expeditious implementation of the requirement that states and local governments place persons with disabilities in community settings rather than in institutions taking into account the resources available to the state and locality and the needs of others with disabilities as per OLMSTEAD V. L.C., 527 U.S. 581 (1999). V. MEDICAL/HEALTH CARE. NAELA believes that a responsive system for the provision of medical services is essential to maintaining and improving the healthcare status of persons with disabilities. The system should be fair, efficient, easy to access, and comprehensive in its scope and should be guided by the following principles:

A. Persons of all ages with disabilities should have access to affordable, comprehensive health and long-term care that includes services such as preventive care, coordinated care, acute care, post-acute care, long-term care and home and community-based care options. Eligibility for covered services should be based on an individualized assessment of medical need without reference to rules of thumb and without regard to the possibility of improvement. Services should be available to assist individuals to maintain or regain functioning. Copayments, deductibles and other out-of-pocket costs should be modest and affordable for all beneficiaries.

B. Without losing federal or state financial support, individuals with disabilities and their families should be free to supplement publicly funded medical care within a defined range.

C. States are encouraged to supplement federally funded medical insurance for disabled populations with state resources based on state-specific income, disability, and resource rules.

D. Systems for delivering healthcare to persons with disabilities should employ a variety of evidence-based delivery approaches and models, based on the use of specially focused demonstration projects that address specially identified health care needs.

E. Medical care and services to persons with disabilities must include an easy-to-use system for filing grievances and appeals that is prompt, accurate, and fair.

F. The system must include a vigorous and ongoing effort to educate people with disabilities about potential medical services. Programs to do this must take into consideration the beneficiary’s age, disability, gender, race, ethnicity, language, geography and education. A comprehensive system of Ombudsmen is essential to protect those unable to participate in these educational programs who are left without those services without the Ombudsmen.

VI. EMPLOYMENT
NAELA believes in the value and dignity of work for all who are able, regardless of mental or physical limitation. NAELA therefore supports the utilization of a variety of legal tools and laws to guard against unlawful discrimination against persons with disabilities who seek employment or who are employed. Similarly, NAELA supports programs and incentives to aid persons with disabilities in their efforts to work to the fullest extent of their abilities.

A. Work incentives and Public benefits while employed

1. NAELA believes that the goal of work incentives should be to provide people with disabilities the opportunity to work as they are able. Incentives must not only include monetary payment, including saving for retirement, including the accumulation of Social Security retirement benefits.

2. NAELA believes that the strongest possible assurances are needed that beneficiaries’ attempts to work, even if successful and long term, will not interfere with retaining or regaining disability status in the absence of substantial medical improvement.

B. Vocational Rehabilitation and Supported Work
NAELA recommends the implementation of the following vocational rehabilitation and supported work policies:

1. All vocational rehabilitation and long-term supported work programs should be paid, integrated, productive work in typical community work settings.

C.Vocational Rehabilitation
NAELA supports the following vocational rehabilitation policy recommendations:

1. People applying for vocational rehabilitation (VR) services under Title I of the Rehabilitation Act of 1973, as amended, should have full due process rights including access to representation at all levels by independent Client Advocacy Programs (CAPs).

2. Transition authority under the IDEA statute for students age 16 and above should be expanded so that they are better prepared for meaningful and productive lives as adults.

3. The Client Assistance Program (CAP) of the Rehabilitation Act of 1973, as amended, should have authority to advocate on behalf of individuals with disabilities in non-VR congregate work settings and in the Veterans Administration’s VR program.

4. The priority in access to VR services for people with more severe disabilities should be maintained.

5. Integrated supported work should be recognized as a legitimate vocational goal.

6. The focus of all VR services should be on developing integrated employment opportunities with adequate pay and benefits for individuals with a full range of disabilities.

D. Supported Employment
NAELA supports the following supported employment policy recommendations:

1. Maintain and increase funding for the Supported Employment State Grants program under the Rehabilitation Act of 1973, as amended.

2. Employment supports should not be subject to artificial time limits. Where needed, people should be provided not only with support to be able to work but also long-term support in finding work, adjusting to an employment situation, and ongoing support to continue working (supported employment).

E. Accessibility
NAELA supports the following accessibility policy recommendation:

1. Accessibility should be extended to the work place and to other venues and amenities used by other employees.

F. Rehabilitation Act of 1974
NAELA supports the following Rehabilitation Act policy recommendation:

1. Maintain–and ensure the oversight and enforcement of–existing civil rights protections of Section 504 of the Rehabilitation Act as they relate to workforce development services.

G. Americans with Disabilities Act-Employment rights

1. In order to reform and clarify the definition of disability with the ADA, NAELA supports enactment of the ADA Amendments Act of 2008, particularly the provisions which:

a. Require that courts evaluate whether a person qualifies as “disabled” without considering “mitigating measures.”
b. Include under the definition of disability any impairment that "materially restricts" a major life activity.
c. Require that, in evaluating whether a person with an episodic condition is substantially limited or materially restricted, the person be evaluated when his or her condition is presenting symptoms.
d. Ensure that a person is protected by the ADA if he or she experiences an adverse action based on a physical or mental impairment regardless of whether that impairment actually substantially limits a major life activity.

2. Reasonable accommodation should extend not only to enabling the individual to work, but to have the same dignity, benefits and access as other employees.

H. The Plan to Achieve Self Support Program
NAELA believes that the Plan to Achieve Self Support (PASS) program should allow continued disregard of expenses essential to enable the person to continue work, as well as expenses to initially obtain the work goal.

I. Ticket to Work
NAELA believes there should be stronger coordination of the SSA Ticket to Work program within the Rehabilitation Act and other federal programs.

VII. EDUCATION FOR CHILDREN WITH SPECIAL NEEDS
NAELA supports the continued and appropriate expansion, including full funding of the Individuals with Disabilities Education Act (IDEA), and other educational initiatives that ensure that children with disabilities receive the educational and related services necessary to enable them to become independent, productive, and contributing members to their communities.

A. Early Intervention
NAELA supports the continuation of efforts to identify children with disabilities under the age of 3, regardless of the severity of their disability, in order to deliver to them special education and related services as early as possible in order to enable them to move smoothly and effectively into appropriate preschool and school-age programs.

B. Free Appropriate Public Education

1. Eligibility

a. NAELA supports the early and comprehensive evaluation of children, in all areas related to any suspected educational disability, to determine whether they are eligible for special education and related services, and their educational needs.
b.NAELA supports the periodic re-evaluation of children with disabilities to determine their continued eligibility for special education and related services, and their educational needs.

2. Free Appropriate Public Education (FAPE)
NAELA supports the principle that each child with a disability who is between the ages of 3-21 is entitled to receive a free appropriate public education (FAPE). That education should consist of special education and related services, including, but not limited to, any speech-language pathology and audiology services, psychological services, physical and occupational services, counseling services and medical services, necessary to enable them to participate in and make progress in the general education curriculum.

3.Individualized Education Program (IEP)

a. NAELA supports the development of an annual Individualized Education Program (IEP) by a team consisting of relevant members of the child’s Local Education Authority (LEA), and his or her parents.
b. In order to facilitate the meaningful participation of parents in the IEP development process, NAELA supports the parents’ rights to review their child’s educational records, to obtain an Independent Educational Evaluation (IEE) at public expense if the parents disagree with an evaluation obtained by the LEA, and to receive prior written notice before the LEA changes or refuses to change the child’s eligibility status or basis for eligibility, evaluation, educational placement or other aspect of the child’s IEP.

4. Least Restrictive Environment (LRE)
NAELA supports the delivery of any education, as well as supplementary aids and services, in a manner that will enable children with disabilities to be educated with their non-disabled peers in regular classes to the maximum extent appropriate.

5. Extended School Year Services (ESY)
NAELA supports the provision of individually-tailored extended school year services when necessary to ensure that children with disabilities do not regress academically over the summer, and enable them to fully benefit from the special education and related services they are programmed to receive in the following school year.

6. Transition Services
NAELA supports the delivery of special education and related services, community activities, and vocational and adult living skills training necessary to enable children with disabilities to successfully transition into their communities after exiting school.

C. Procedural Safeguards

1. NAELA supports the continuation and appropriate expansion of administrative and judicial safeguards necessary to protect the educational rights of children with disabilities, including, but not limited to, mediation, impartial due process hearings, and follow-on civil appeals.

2. So that parents are better enabled to protect fully their children’s educational rights, NAELA supports the creation and maintenance of appropriate discovery mechanisms, the creation of an Ombudsman function at the federal, state, and local level, and the award of attorney’s and expert fees to parents who prevail in administrative and judicial proceedings.

3. NAELA further supports the child’s right to remain in his or her current educational setting and to continue to receive his or her full range of educational and related services during the pendency of any parent or school-initiated administrative or judicial proceeding, including any disciplinary matter.

VIII. ADVOCACY AND LITIGATION
NAELA believes that legal assistance is an important tool in assuring fairness and access to necessary services for persons with disabilities. The ability to litigate to protect one’s rights, including assuring that appropriate educational, medical, and social services are in place, is essential. Similarly, it is important to have a cadre of skilled advocates who are versed in relevant laws and regulations. NAELA supports the following advocacy and litigation principles:

A. Persons with disabilities often require specialized legal assistance that is not readily available. A mission of NAELA is to assure the development of a cadre of specialists to provide this important representation.

B. NAELA should work closely with publicly funded legal assistance providers and other segments of the private bar to assure the broadest range of legal assistance for persons with disabilities.

C. Publicly funded legal assistance to persons with disabilities should be available in languages that are needs-appropriate, including the use of oral interpreters, sign-language interpreters, and accompanying materials in alternative formats, such as computer systems, Braille, and large print formulations.

Adopted April 2009
Posted March 2013