Hot Legal Topics in Planning/Advocating for Folks with Disabilities & Their Families

Hot Legal Topics in Planning/Advocating for Folks with Disabilities & Their Families Patricia E. Kefalas Dudek Patricia E. Kefalas Dudek & Associates 30445 Northwestern Hwy, Suite 250 Farmington Hills, MI 48334 (248) 254-3462 Email: pdudek@pekdadvocacy.com Website: www.pekdadvocacy.com

“Out of the Blue” Changes to “Sole Benefit Rule” in May, 2012 • Sole benefit rule • SI 011120.203B – benefits to other individuals or entities during lifetime of beneficiary or allows for early termination during lifetime of beneficiary with payment to third party or entity (other than Medicaid agencies) = Disqualification • New example: travel expenses for family/friends to visit beneficiary = Disqualification • New example: payments to family members serving as care providers who are not medically certified, medically trained or approved to provide care = Disqualification Excerpt from PowerPoint: Sole Benefit Rule Update (Click here for audio) By: Theresa M. Varnet, Esq & Frederick M. Misilo, Esq

Spring 2012 ASNP Conference • Eric Ice, Acting Director of SSI and Rep. Payee Policy Office: “Payments to all 3rd parties which previously were interpreted as exempt would now be seen as violating the sole benefit = countable income to the beneficiary for SSI purposes.” • Much tribulation and confusion for advocates, pooled trust administrators, beneficiaries and special needs attorneys Excerpt from PowerPoint: Sole Benefit Rule Update (Click here for audio) By: Theresa M. Varnet, Esq & Frederick M. Misilo, Esq

Advocacy Efforts and Results • Marty Ford, Director of Consortium for Citizens with Disabilities, approached at Arc of the United States Annual Conference in October, 2012 enlisted to intervene; • Correspondence to Commissioner Astrue from Marty Ford advising of harmful consequences of new POMS interpretations on persons with disabilities and family members; • New POMS transportation example removed on December 12, 2012. Excerpt from PowerPoint: Sole Benefit Rule Update (Click here for audio) By: Theresa M. Varnet, Esq & Frederick M. Misilo, Esq

Advocacy Efforts and Results • Commissioner Astrue seeks input from broad spectrum of advocates including members of the Arc, ASNP, the Consortium of Citizens with Disabilities, NAELA, SNA, and representatives of pooled income SNTs; • Identification of issues to be discussed: • Travel expenses; • 3rd party reimbursement; • Family members as care providers; • Payment of legal obligations of beneficiary from SNTs; • Sole benefit standard; • Reasonable time to amend trusts when rules change; • Consistency of adjudication and policy interpretation across regions; • Education of SSA field staff. Excerpt from PowerPoint: Sole Benefit Rule Update (Click here for audio) By: Theresa M. Varnet, Esq & Frederick M. Misilo, Esq

Advocacy Efforts and Results • January 16, 2013 meeting; • Positive results: • Trustees may now reimburse 3rd parties for payments made to purchase goods and services for the beneficiary without the reimbursement being counted as income to the beneficiary; • Trustees can now pay family members who act as care providers so long as treated as employee of trust or independent contractor and need for such services are documented. Excerpt from PowerPoint: Sole Benefit Rule Update (Click here for audio) By: Theresa M. Varnet, Esq & Frederick M. Misilo, Esq

Advocacy Efforts and Results • May 15, 2013 meeting • POMS SI 01120.201F.2.b, changed on May 16, 2013 to read: “Consider the following disbursements or distributions to be for the sole benefit of the trust beneficiary: -- Payments to a third party that result in the receipt of goods or services by the trust beneficiary; -- Payment of third party travel expenses which are necessary in order for the trust beneficiary to obtain medical treatment; -- Payment of third party travel expenses to visit a trust beneficiary who resides in an institution, nursing home, or other long-term care facility (e.g., group homes and assisted living facilities) or other supported living arrangement in which a non-family member or entity is being paid to provide or oversee the individual’s living arrangement. The travel must be for the purpose of ensuring the safety and/or medical well-being of the individual.” Excerpt from PowerPoint: Sole Benefit Rule Update (Click here for audio) By: Theresa M. Varnet, Esq & Frederick M. Misilo, Esq

Advocacy Efforts and Results • New 90 day window enacted allowing for amendment of trusts which were previously found to be exempt from resource counting in order to comply with new third party travel expense provisions; • Early termination rules clarified; • Reasonable compensation to non-family member Trustees do not violate sole benefit rule. • Compensation to family member Trustees will receive review on an individual basis. Excerpt from PowerPoint: Sole Benefit Rule Update (Click here for audio) By: Theresa M. Varnet, Esq & Frederick M. Misilo, Esq

Moving Forward • Senior SSA officials and advocates will continue to meet; • Each SSA Office of Quality Performance to have a “go-to” SNT resource person; • SSA staff training – a national approach; • Training materials to be developed and provided to attorneys; • Trust review to be handled by “trust experts”; • SSA to develop more “Decision Trees” Excerpt from PowerPoint: Sole Benefit Rule Update (Click here for audio) By: Theresa M. Varnet, Esq & Frederick M. Misilo, Esq

Implications for Us • Include powers to amend trusts to quickly respond to changes in policy interpretations; • Shorten “laundry list” of examples of what trust can/can’t pay for contained within Trust • Advise all clients that the law in this area changes and provide no guarantee that trust will work if the law does change; • Advise all clients that they should regularly have their trusts reviewed. • Non-professional Trustees should meet at least annually with special needs attorney to review trust administration and any changes in the law. Excerpt from PowerPoint: Sole Benefit Rule Update (Click here for audio) By: Theresa M. Varnet, Esq & Frederick M. Misilo, Esq

Coordinating Special Needs Trustwith Government Benefits Coordination of Public Benefits Funding Letter of Intent

Funding a Special Needs Trust: How Much is Enough? • The first step in determining the amount to protect in an SNT is considering your goals and expectations for your child's future. • If you haven't yet created a Memorandum of Intent, also called a Letter of Intent or a Life Plan, this is the time to draft such a document. It should address factors such as your child's medical condition, legal advocacy needs, ability to work and desired living arrangements, all of which will drive the special needs calculations. • This really allows for details on how to coordinate public benefits with the private resources • Look at samples: important to address private health insurance, uncovered Medicaid, dental specifically.

Letter of Intent • A Letter of Intent is one of the most important documents a parent can complete for the child’s future care-givers • This is not a stand-alone document; it should be incorporated into an estate planning process • Can be used when caring for parents or grandparents as well • The Letter of Intent should provide the trustee with guidance as to what “special needs” the beneficiary has or will have and define the quality of life as quality means different things to different people • The Letter of Intent should be frequently updated as the beneficiary’s needs change

Sample Letters of Intent • http://www.pekdadvocacy.com/firm-news/client-intake/attachment/letter-of-intent-information-regarding-child/ • http://www.pekdadvocacy.com/documents/pattispublications/Representing/Att7.pdf • http://www.pekdadvocacy.com/documents/pattispublications/Representing/Att8.pdf

Quality of Life Social, travel, recreation, etc. Education Housing with Person Directed Supports Transportation Medical Care and Equipment Real Employment Letter Of Intent Be Specific!

Transportation Phone Cable Social / Recreational Housing Rent from SSI or SSDI Rent $ Family Community Support Services CMH Support Services (Waiver) Dept. of Community Health-formerly FIA Adult Home Help Services Food Stamps Roommate Beneficiary Coordination of Public Benefits with SNTsHow It Works Special Needs Trust Link to: Benefits Checklist

Legislative Advocacy Michigan’s Non-Compliance with the ADA & Other States Sequester Trust for Veterans Special Education Fairness Act Over 65 Pooled Trust Seclusion & Restraint

Sequester Hits Special Education Like ‘Ton of Bricks’ A new round of special education cuts were taking hold, prompted by a 5 percent reduction in federal funding of the Individuals with Disabilities Education Act (IDEA), said Lipsitt, a longtime advocate for disabled children and co-chair of the Michigan Alliance for Special Education. Excerpt from: Sequester Hits Special Education Like 'Ton of Bricks'

Sequester Hits Special Education Like ‘Ton of Bricks’ Lipsitt said it means that many schools have eliminated resource rooms where children can go to get help in areas such as math, reading, writing and organizational skills. Many schools will have fewer speech, occupational or physical therapists, along with social workers and school psychologists, which means students who previously received speech therapy twice a week might only receive it once week, for example. And in some general education classrooms that had two teachers – one for the whole class and one specifically to support students with special needs – the special education teacher has been eliminated. Excerpt from: Sequester Hits Special Education Like 'Ton of Bricks'

Sequester Hits Special Education Like ‘Ton of Bricks’ Those cuts further exacerbate the federal government’s chronic underfunding of its contribution toward the education of students with disabilities. Under the IDEA, the federal government committed to giving states funding for up to 40 percent of the difference between the cost of educating a disabled student and a general student. The most the federal government has ever given the states is 18.5 percent in 2005 (aside from a one-time infusion of economic stimulus funding in fiscal year 2009), and the figure has been declining since, according to Joel Packer, executive director of the Committee for Education Funding, a coalition of education organizations. Under the sequester, the federal share fell to 14.9 percent, the lowest federal contribution by percent dating to 2001. Excerpt from: Sequester Hits Special Education Like 'Ton of Bricks'

Sequester Hits Special Education Like ‘Ton of Bricks’ “It doesn’t matter what the feds send down to the locals and the states in federal support, the law requires that states and local school districts identify and serve every student that they deem to be eligible and in need of special education,” said Candace Cortiella, director of The Advocacy Institute. The institute is a nonprofit that provides training for special education advocates and runs the web site IDEA Money Watch, which tracks federal funding for special education. Excerpt from: Sequester Hits Special Education Like 'Ton of Bricks'

Basic Rights of Special Education Students The governing statute is the Individuals with Disabilities Education Act, 20 U.S.C. 1400 et seq. (IDEA), although your state law may add to the rights discussed in this article. Under the IDEA, a child with a disability is defined as a child with one or more of a number of educational disabilities, who, by reason thereof, requires special education and related services. 34 C.F.R. Section 300.8(a). Special education is defined as specially designed instruction, which may require the LEA to adapt the content, methodology, and/or delivery of the instruction in order to meet the unique needs of the child, and ensure the child’s access to the general education curriculum. 34 C.F.R. Section 300.39 (a), (b)(3). Related services are the transportation, developmental, corrective, and other supportive services that the child needs in order to benefit from his or her special education services. 34 C.F.R. Section 300.34(a). Excerpt from: School Discipline and the Rights of Special Education Students Under the Individuals with Disabilities Act By: Edmund Law

Basic Rights of Special Education Students The special education and related services are documented in the child’s Individualized Education Program (IEP). 34 C.F.R. Section 300.320. The IEP is implemented in the child’s placement, which can best be described as the environment(s) in which the child receives the educational services (regular education class, small group outside class, special education class, or separate special education day or residential setting, etc.), rather than simply the school the child actually attends. Finally, the child must receive the educational services in the least restrictive environment (LRE), which is the setting that affords the child the opportunity to be mainstreamed with, or educated with his or her non-disabled peers to the maximum extent appropriate. 34 C.F.R. Section 300.114(a). Excerpt from: School Discipline and the Rights of Special Education Students Under the Individuals with Disabilities Act By: Edmund Law

Code of Student Conduct Violations Special education students, like their general education peers, are typically subject to a code of student conduct. What happens if the special education student violates one or more provisions of the code of conduct? Generally speaking, if the provision calls for a suspension of 10 days or less, the special education student can be disciplined in the same manner as a general education student, and is not entitled to receive educational services during the suspension. 34 C.F.R. Section 300.530(b). However, the special education student is entitled to receive services once he is suspended more than 10 days (this may not be the child’s first suspension this school year) in any one school year. 34 C.F.R. Section 300.530(b)(2), (d); 300.531. The services must enable the child to continue to participate in the general education curriculum, and the LEA is also required to conduct a functional behavior assessment (a FBA, which looks at what the behaviors are, and when, where, and why they occur) and develop a behavioral intervention plan (BIP) designed to address the underlying behavior so that it does not reoccur. Id. Excerpt from: School Discipline and the Rights of Special Education Students Under the Individuals with Disabilities Act By: Edmund Law

Suspensions of 10 Days or More The rules change dramatically when a LEA suspends a child for a period of more than 10 consecutive school days, or when a series of shorter removals are properly aggregated (if the underlying behavior is similar, and depending upon the proximity of the removals, and the total number of days), and together add up to more than 10 days. In this instance, the LEA is deemed to be changing the child’s placement, and must convene an IEP meeting within 10 days to determine whether the conduct giving rise to the suspension was a manifestation of the child’s disability. 34 C.F.R. Excerpt from: School Discipline and the Rights of Special Education Students Under the Individuals with Disabilities Act By: Edmund Law

Suspensions of 10 Days or More Section 300.530(e); 300.536. At the IEP meeting, the IEP Team (which consists of a number of the LEA representatives, including some of the child’s teachers, as well as the parents) must review any relevant information in the child’s file, including the IEP, any teacher observations, and consider any relevant parent input, before determining whether a) the conduct was caused by or had a direct and substantial relationship to the child’s disability, or b) the conduct was the direct result of the school system’s failure to implement the child’s IEP. 34 C.F.R. Section 300.321(a); 300.530. If the answer to either question is yes, the IEP Team must find that the conduct was a manifestation of the child’s disability. 34 C.F.R. Section 300.530(e). The LEA must conduct or update any existing FBA/BIP and, most important, must return the child to his or her current placement, unless the parties agree otherwise or one of three “special circumstances” is present (weapons, drugs, or the child inflicted serious bodily harm). 34 C.F.R. Section 300.530(f). Excerpt from: School Discipline and the Rights of Special Education Students Under the Individuals with Disabilities Act By: Edmund Law

Suspensions of 10 Days or More What happens if the IEP Team determines that the conduct was not a manifestation of the child’s disability? The child can be disciplined in the same manner as his general education peers, and be suspended for more than 10 days. 34 C.F.R. Section 300.530(c), (d). The child is still entitled to receive the educational services discussed above, and the FBA/BIP must be conducted or updated to address the underlying behavior, but the services will generally be delivered to the child in an alternative, more restrictive setting. Id. Excerpt from: School Discipline and the Rights of Special Education Students Under the Individuals with Disabilities Act By: Edmund Law

Discipline of a Student with a Disability Finally, what happens if the child is not currently a special education student? The child may still be entitled to the disciplinary protections under the IDEA if the LEA had knowledge that the child was a child with a disability under the IDEA. 34 C.F.R. Section 300.534(a). What constitutes knowledge? Did the child’s parent previously write to the LEA’s supervisory/administrative personnel or one of the child’s teachers to express concern that the child needed special education/related services? 34 C.F.R. Section 300.534(b). Alternatively, did the parent previously request that the child be evaluated to see if he or she was eligible for special education/related services? Excerpt from: School Discipline and the Rights of Special Education Students Under the Individuals with Disabilities Act By: Edmund Law

So, in sum…. What should you do if your special needs client calls you and tells you that his or her child has been suspended? If the suspension is for 10 days or less, there may be little that you can do, but you should inquire whether the student was previously disciplined during the current school year. However, if the suspension is for more than 10 days, or is the latest in a series of removals that add up to more than 10 days, time is of the essence because the student’s manifestation IEP meeting may already be (or needs to be) scheduled. Excerpt from: School Discipline and the Rights of Special Education Students Under the Individuals with Disabilities Act By: Edmund Law

Seclusion & Restraint of Students with Special Needs • In 2003, student with autism in Michigan died following a seizure during which the assistant principal placed the child prone on the floor, holding his arms behind his back while aides pinned his legs and shoulders.[2] They restrained him for about an hour without calling for medical professionals. The official cause of death was “…prolonged physical restraint in a prone position…with extreme mental and motor agitation…”.[3] The student’s teacher did not know the student was diagnosed with autism, and the assistant principal had no training in the dangers of prone restraint.[4] • One need not look far to find stories like these. Sadly, a few moments on the Internet will turn up dozens of similar stories. Across the country, in district after district, seclusion and restraint of children with disabilities is unregulated, unreported, and abused. Additionally, reporting requirements are weak (if they exist at all). It is likely that hundreds of less outrageous but equally offensive objectionable actions are taken every year. Full Article: Abusing Seclusion and Restraint of Students with Special Needs By: Blaine P. Brockman, J.D.

Seclusion & Restraint of Students with Special Needs • As special needs attorneys, we must be zealous advocates for people with disabilities in schools and educational environments. The real harm done to people is unacceptable. We would not tolerate such practices if they were applied to our own children, and our society would not likely accept them if they were applied to typically developing children. Yet, one Columbus, Ohio school had a 7-foot by 4-foot cell-like room with a steel door, an observation peephole, and a dead-bolt lock accessible only from the outside of the room.[21] That room was photographed only one year ago. In what world, outside of the criminal justice system, is that an acceptable way to treat people? Full Article: Abusing Seclusion and Restraint of Students with Special Needs By: Blaine P. Brockman, J.D.

Seclusion & Restraint of Students with Special Needs • Alarmingly, school administrators resist efforts to broadly regulate seclusion and restraint. The American Association of School Administers (AASA) recently issued a report, misleadingly titled “Keeping Schools Safe,” that criticized congressional efforts to regulate seclusion and restraint.[22] Using data from an informal survey, distributed over a one-week period, with 369 unnamed members responding, the AASA made generalized conclusions about how well school districts use behavioral interventions, and how schools would be less safe due to federal regulation. Full Article: Abusing Seclusion and Restraint of Students with Special Needs By: Blaine P. Brockman, J.D.

Seclusion & Restraint of Students with Special Needs • As an advocate, I am appalled at the insensitive and discriminatory language used by the AASA. According to the AASA, “If a student has an outburst in class and a behavioral specialist believes she would benefit from remaining in an isolated, safe space until she calms down, then AASA questions why school . . . staff would be unable to recommend [seclusion].”[23] (emphasis added) Also, the AASA “. . . does not believe it is safer or healthier for the student, as well as other students, to experience a student’s entire “meltdown” in a completely unrestricted setting.”[24] (internal quotes in original) Full Article: Abusing Seclusioin and Restraint of Students with Special Needs By: Blaine P. Brockman, J.D.

Seclusion & Restraint of Students with Special Needs • If you have no opportunity to confront schools about this issue, help change the system by supporting the advocacy effort. It took action by the state P&A organization along with a dose of public outrage to compel the State of Ohio to develop a decent policy on seclusion and restraint. It’s a good policy; better than many. Yet it is still lacking. It does not ban seclusion outright. Additionally, it does not apply to the growing number of charter (private) schools in the state. Advocates must be knowledgeable about their state’s policies. There are opportunities, from the local school board to the Congress, to speak up where those policies are lacking or non-existent.[28] If seclusion and restraint are occurring in your schools with limited or no restrictions, it is likely that there are episodes of abuse. Full Article: Abusing Seclusioin and Restraint of Students with Special Needs By: Blaine P. Brockman, J.D.

Seclusion & Restraint of Students with Special Needs • In today’s world, we have come a long way in recognizing the rights of people with disabilities. In hospitals and nursing homes we have recognized the rights of people to be free for seclusion and restraint. Yet, in our schoolhouses, seclusion and restraint of people with disabilities is being abused. People are being hurt physically and emotionally. People are dying. It must stop. Full Article: Abusing Seclusioin and Restraint of Students with Special Needs By: Blaine P. Brockman, J.D.

Additional Resources • Special Education Spending Declines • Medicaid and Third Party Payments in School

Congressional Action on NAELA’s Special Needs Trust Fairness Act • Plans are underway for Sen. Bill Nelson (D-FL), chair of the Senate Special Committee on Aging and member of the Senate Finance Committee, to introduce NAELA’s Special Needs Trust Fairness Act bill in the Senate in September. • Recent letters in support of Sen. Nelson’s efforts came from the Academy of Florida Elder Law Attorneys (AFELA), the Florida Bar Elder Law Section, and the Special Needs Trust Committee of the Florida Bar Elder Law Section. • These letters and contacts are especially important right now as Sen. Nelson prepares to introduce the Senate version of H.R. 2123, Special Needs Trust Fairness Act of 2013. Please ask your senators to be original cosponsors of the bill. In addition, ask your representative to cosponsor H.R. 2123, the Special Needs Trust Fairness Act, which was introduced by Rep. Glenn Thompson (R, PA-5th). • Use the Advocacy Action Center on the NAELA website to access letters, talking points, and background information and to identify your legislators. Ask them to cosponsor both bills. Excerpt from:NAELA Advocacy Update

Actions Speak Louder Than Words There Is a Way to Fix This Inequity • On May 23, 2103, Sen. Kay Hagan (D-NC) introduced S.1076, the Disabled Military Child Protection Act of 2013, which provides for the payment of monthly annuities under the Survivor Benefit Plan to a special needs trust for a veteran’s child with a disability. Congressman Jim Moran (D-8th, VA) introduced the same bill in the U.S. House of Representatives on June 4, 2013. Many members of the National Academy of Elder Law Attorneys (NAELA) and the Special Needs Alliance lobbied for support of this legislation during a joint “Hill Day” event in April 2013. Excerpt from:Actions Speak Louder Than Words By: Patricia E. Kefalas Dudek Also see:NAELA Advocacy Update September 2013

Actions Speak Louder Than Words • Sen. Kirsten Gillibrand (D-NY) added the Disabled Military Child Protection Act language to the markup package for the National Defense Authorization Act (NDAA) (S.1197). The Senate Armed Services Committee voted and approved the NDAA with the Disabled Military Child Protection Act language. This language was not included in the House version of the National Defense Authorization Act (H.R. 1960), so once the full Senate approves the bill and this provision, it will need to be addressed during the conference committee. Excerpt from: Actions Speak Louder Than Words By: Patricia E. Kefalas Dudek Also see:NAELA Advocacy Update September 2013

Over 65 & Pooled Trust Until relatively recently there was no prohibition from CMS against establishing pooled trust sub-accounts in behalf of disabled persons over the age of 65 who had assets (either their own, or assets resulting from a PI settlement or from other third party sources) in excess of the $2000 asset limit. Such funds can then be used for the benefit of the disabled person to purchase goods and services not covered by Medicaid that may be necessary to assure a decent quality of life for that person. From 1993 through early 2008, CMS did not at any time propose regulations or offer any policy statement or other sub-regulatory guidance suggesting that such transfers were impermissible under federal law. In this regard, disabled persons over 65 were in a similar position to those 65 and under, who are unquestionably permitted to set up special needs trusts or pooled trust sub-accounts, and to benefit from supplemental needs trusts established by third parties. To view full article: Transfers to Pooled Trust Sub-accounts By Persons Over 65 under Medicaid Statute

Over 65 & Pooled Trust Establishing pooled trust sub accounts for the benefit of disabled persons over 65 is explicitly contemplated and permitted by the federal Medicaid statute’s provisions pertaining to pooled trusts, which were enacted in 1993 as part of the Omnibus Budget Reconciliation Act, Pub.L. 103-66, 107 Stat. 312 (August 10, 1993) (hereinafter, OBRA ‘93) Congress has explicitly established three distinct exceptions to the general rule that assets in a first-party funded trust are available for purposes of Medical Assistance eligibility, one of which is a transfer to a pooled trust sub-account. Federal law discusses three types of trusts the assets of which are considered excluded, if the trusts are properly established and administered. These are the Special Needs Trust, the Miller Trust, and the Pooled Trust. To view full article: Transfers to Pooled Trust Sub-accounts By Persons Over 65 under Medicaid Statute

Directory of Pooled Trust Medicaid and SSI law permit "(d)(4)(C)" or "pooled trusts" for beneficiaries with special needs. Such trusts pool the resources of many beneficiaries, and those resources are managed by a non-profit association. Unlike individual disability trusts, which may be created only for those under age 65, pooled trusts may be for beneficiaries of any age and may be created by the beneficiary herself. Click herefor the Directory of Pooled Trust Around the U.S.

What’s Happening in Washington?

ACA Implementation ACA Essential Benefits Access to Heath Care Cost Sharing Rules Mental Health Parity Expanded Access to Medicaid Key Provisions LTC Commission Closing the “Donut Hole” Medicare

The Affordable Care Act (ACA) • The Affordable Care Act (ACA) is the most important legislation affecting special needs planning since 1993 when Congress enacted 42 USC §1396p(d) that authorized special needs trusts (SNTs). Much of the ACA is focused on protecting the rights of people with chronic, long-term physical or cognitive conditions. In this article, we will discuss the important features of the ACA to allow the special needs practitioner to provide proper advice to their clients and how the ACA will affect existing special needs plans. Excerpt from: How the Affordable Care Act Affects Special Needs Planning By: Kevin Urbatsch, Esq. & Michelle Fuller, Esq

Access to Health Care • Under the provisions of the ACA, many of the barriers to private health care for persons with disabilities will disappear. The biggest change is that a pre-existing condition will no longer deny an individual access to private health care. The ACA also makes private health care more attractive because it removes the lifetime limits on health insurance that made private plans unattractive to many persons with profound disabilities. An added benefit of the ACA is that it requires private health care coverage for children (up to age 26) on a parent’s plan even if that child has moved away, is disabled, gone to school, or married. Also, the ACA caps the amount of money that a person will have to pay out-of-pocket each year on premiums and deductibles. For example, if the person in California earns less than $17,235 a year, the annual out-of-pocket limit he or she has to pay is $2,250. Otherwise, the general ACA annual out-of-pocket limit for an individual is $6,250 per year. Excerpt from: How the Affordable Care Act Affects Special Needs Planning By: Kevin Urbatsch, Esq. & Michelle Fuller, Esq

Access to Health Care • There is a mandate that all persons in the United States be covered by health care. Because so many persons with disabilities have limited income, the ACA provides ways to pay premiums at a reduced cost. If the person with a disability has income, he or she can pay a reduced premium even if they earn up to 400 percent of the federal poverty limit (FPL) ($45,960 for individual in 2013). For example, for the year 2014 in California, a person earning less than $17,235 a year will pay between $19 to $57 a month for a premium based on their actual income. Excerpt from: How the Affordable Care Act Affects Special Needs Planning By: Kevin Urbatsch, Esq. & Michelle Fuller, Esq

Expanded Access to Medicaid • For those persons with disabilities who have little to no income, access to Medicaid (for people between the ages of 19 to 65) will be expanded to include individuals with incomes up to 133 percent of the FPL (plus an automatic 5 percent income disregard) ($15,586 for individual in 2013). There is no resource limitation for this new expanded Medicaid program. Thus, for new people qualifying for Medicaid, they can have more than the $2,000 in resources and still qualify for Medicaid if their income is below 138 percent of the FPL. It is important to note that this new expanded program does not apply to persons currently receiving Medicaid, for those over age 65 applying for long-term care nursing home care, and some other restrictions. Further, not every state has agreed to participate in Medicaid expansion, so it is important to see if your state has agreed to implement expanded Medicaid. Excerpt from:How the Affordable Care Act Affects Special Needs Planning By: Kevin Urbatsch, Esq. & Michelle Fuller, Esq

Expanded Access to Medicaid • There are several important health care benefits generally not covered by the ACA and private health care that are important to persons with disabilities. Two of the most important (and expensive) benefits that the ACA will not cover include payment for long-term skilled nursing care and payments for in-home care giving services. Thus, for clients with disabilities who require nursing home level care or who require caregivers in order to remain independent in the community will likely still need Medicaid to assist them with their ongoing care. In some states, Medicaid provides unique services for the developmentally disabled that specialize in support for independent living and other related services. Thus, it is important for the practitioner to determine what health care-related services for persons with disabilities are covered by Medicaid (but not through private health care) in determining whether a client should give up his or her government-paid-for health care. Excerpt from:How the Affordable Care Act Affects Special Needs Planning By: Kevin Urbatsch, Esq. & Michelle Fuller, Esq

Key Provisions in ACA • The Affordable Care Act has set new standards, called essential health benefits, outlining what health insurance companies must now cover. But there's a catch: Insurance firms can still pick and choose to some degree which specific therapies they'll cover within some categories of benefit. And the way insurers interpret the rules could turn out to be a big deal for people with disabilities who need ongoing therapy to improve their day-to-day lives. • The new rules for what health insurance companies have to cover may still change. Federal regulators plan to review them as the health law rolls out and could make changes in 2016. Excerpt from:Obamacare Presents Complex Choices For People with Disabilities

Hot Legal Topics in Planning/Advocating for Folks with Disabilities & Their Families