hot legal topics in planning/advocating for folks with disabilities & their families

Hot Legal Topics in Planning/Advocating for Folks with

Disabilities & Their FamiliesPatricia E. Kefalas Dudek

Patricia E. Kefalas Dudek & Associates30445 Northwestern Hwy, Suite 250

Farmington Hills, MI 48334(248) 254-3462

Email: [email protected]: www.pekdadvocacy.com

mailto:[email protected]

http://www.pekdadvocacy.com/

2

“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

http://www.specialneedsplanners.com/conference_calls/audio_archive.asp

3

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



4

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.



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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.



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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.



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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.”



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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.



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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”



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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.



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Coordinating Special Needs Trustwith Government Benefits

Funding Coordination of Public Benefits

Letter of Intent

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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.

Funding a Special Needs Trust: How Much is Enough?

http://www.pekdadvocacy.com/firm-news/client-intake/attachment/letter-of-intent-information-regarding-child/

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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

Letter of Intent

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http://www.pekdadvocacy.com/documents/pattispublications/Representing/Att7.pdf


Sample Letters of Intent













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Letter Of Intent

Be Specific!

Housing with Person Directed Supports

Education

Transportation

Medical Careand Equipment

Quality of LifeSocial, travel, recreation,

etc.

Real Employment

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Coordination of Public Benefits with SNTs

How It WorksSpecial Needs TrustHousing

RoommateBeneficiary

Rent

$

Rent

from

SSI o

r SS

DI Family CommunitySupport ServicesCMHSupport Services (Waiver)Dept. of Community Health-formerly FIAAdult Home Help ServicesFood Stamps

Transportation

Phone

Cable

Social / Recreational

Link to: Benefits Checklist

http://www.pekdadvocacy.com/wp-content/uploads/2012/03/Benefits_Checklist_3-21-12.pdf

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Legislative AdvocacySequester

Over 65 Pooled Trust

Michigan’s Non-

Compliance with

the ADA & Other

States

Trust for Veterans

Fairness Act

Special Education

Seclusion & Restraint

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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’

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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.



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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.



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“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.



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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

http://www.naela.org/Public/Membership/Sections/SNL_Section/SNL_Newsletters/Fall_2012/School_Discipline_and_the_Rights_of_Special_Education_Students_Under_the_IDEA.aspx


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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).


By: Edmund Law

Basic Rights of Special Education Students



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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.


By: Edmund Law

Code of Student Conduct Violations



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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.


By: Edmund Law

Suspensions of 10 Days or More



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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).


By: Edmund Law




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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.


By: Edmund Law




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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?


By: Edmund Law

Discipline of a Student with a Disability



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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.


By: Edmund Law

So, in sum….



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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 NeedsBy: Blaine P. Brockman, J.D.

Seclusion & Restraint of Students with Special Needs

http://www.naela.org/Public/Section_Newsletters/Special_Needs_Law/Summer%202013/Abusing_Seclusion_and_Restraint_of_Student_with_Special_Needs.aspx

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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.



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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




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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






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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.







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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.







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Special Education Spending Declines

Medicaid and Third Party Payments in School

Additional Resources

http://www.disabilityscoop.com/2013/09/16/sped-spending-declines/18717/

http://www.asha.org/practice/reimbursement/medicaid/thirdparty-payment/

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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

Congressional Action on NAELA’s Special Needs Trust Fairness Act

http://naela.informz.net/z/cjUucD9taT0zNDczNzkxJnA9MSZ1PTEwMjQyMTA5MjkmbGk9MTg4NTEyNzI/index.html

http://naela.informz.net/z/cjUucD9taT0zNDczNzkxJnA9MSZ1PTEwMjQyMTA5MjkmbGk9MTg4NTEyNzM/index.html

http://naela.informz.net/informzdataservice/onlineversion/public?mailingInstanceId=3473791

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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 WordsBy: Patricia E. Kefalas Dudek

Also see: NAELA Advocacy Update September 2013

Actions Speak Louder Than Words


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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 WordsBy: Patricia E. Kefalas Dudek

Also see: NAELA Advocacy Update September 2013

Actions Speak Louder Than Words


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Over 65 & Pooled TrustUntil 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 thirdparties.

To view full article: Transfers to Pooled Trust Sub-accounts By Persons Over 65 under Medicaid Statute

http://www.cdrnys.org/files/pooledtrust/Pooled_Trust_Info.pdf

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Over 65 & Pooled TrustEstablishing 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

http://www.cdrnys.org/files/pooledtrust/Pooled_Trust_Info.pdf

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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 here for the Directory of Pooled Trust Around the U.S.

http://www.specialneedsanswers.com/resources/directory_of_pooled_trusts.asp

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What’s Happening in Washington?

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ACA ImplementationACA

Access to Heath Care

Expanded Access to Medicaid

Cost Sharing Rules

Mental Health Parity

Key Provisions

Essential Benefits

Medicare

LTC CommissionClosing the “Donut

Hole”

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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 PlanningBy: Kevin Urbatsch, Esq. & Michelle Fuller, Esq

The Affordable Care Act (ACA)

http://www.naela.org/Public/Library/Publications/Publications_Main/NAELA_News_Archive/NAELA_News_2013/August_September_2013/ACA_Special_Needs_Planning.aspx

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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.


Access to Health Care


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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.


Access to Health Care


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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.




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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.




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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

Key Provisions in ACA

http://www.kaiserhealthnews.org/Stories/2013/August/13/Disabilities-And-Essential-Health-Benefits.aspx

http://www.kaiserhealthnews.org/Stories/2013/August/13/Disabilities-And-Essential-Health-Benefits.aspx

The ACA links the essential health benefits package to limits on cost-sharing. So health plans that are required to provide essential health benefits will also be required to limit the amount consumers will have to pay out-of-pocket. Specifically, health plans will be prohibited from requiring consumers to pay annual cost-sharing that is greater than the limits for high deductible plans linked to health savings accounts. Currently, those limits are $5,950 per year for individuals and $11,900 per year for families. In addition, small group plans must limit deductibles to $2,000 for individual coverage and $4,000 for family coverage. As with all health plans under the ACA, there is no cost-sharing for certain preventive health services recommended by the United States Preventive Services Task Force.

To view full article: Essential Benefits

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Essential Benefit Package

http://101.communitycatalyst.org/basics/health_insurance_products?id=0008

http://101.communitycatalyst.org/basics/group_plans?id=0002

http://www.communitycatalyst.org/resources/glossary?entry=deductible

http://101.communitycatalyst.org/aca_provisions/essential_benefit_package

Ambulatory patient services Emergency services Hospitalization Maternity and newborn care Mental health and substance use disorder services Prescription drugs Rehabilitative and habilitative services and devices Laboratory services Preventive and wellness services Chronic disease management Pediatric services, including oral and vision care

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Essential Benefit Covered Under the ACA

The ACA links the essential health benefits package to limits on cost-sharing. So health plans that are required to provide essential health benefits will also be required to limit the amount consumers will have to pay out-of-pocket. Specifically, health plans will be prohibited from requiring consumers to pay annual cost-sharing that is greater than the limits for high deductible plans linked to health savings accounts. Currently, those limits are $5,950 per year for individuals and $11,900 per year for families. In addition, small group plans must limit deductibles to $2,000 for individual coverage and $4,000 for family coverage. As with all health plans under the ACA, there is no cost-sharing for certain preventive health services recommended by the United States Preventive Services Task Force.

To view full article: Essential Benefits

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What are the cost-sharing rules for the essential health benefits?

http://101.communitycatalyst.org/basics/health_insurance_products?id=0008

http://101.communitycatalyst.org/basics/group_plans?id=0002

http://www.communitycatalyst.org/resources/glossary?entry=deductible

http://101.communitycatalyst.org/aca_provisions/essential_benefit_package

If you’re an employer, it’s likely that your workers have been reluctant to educate themselves about their choices in light of upcoming changes to the health care scene, such as the implementation of state and federal exchanges under the Patient Protection and Affordable Care Act (ACA). That may be because they’re waiting for you to make the first move.

According to results from the recently released 2013 Aflac WorkForces Report, 75% of workers surveyed said that they thought their employers would educate them about changes to their health care coverage as a result of the ACA;s health care reform provisions, but only 13% of employers said that educating employees about health care reform was important to their organization.

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Are your employees ready for consumer-driven health care?

http://www.aflac.com/aflac_workforces_report/workforce_study_results.aspx

According to results reported by Aflac, 53% of employers have implemented a high-deductible health plan (HDHP) in the last three years, and Aflac says this is a growing trend. The survey also shows that, despite the shift toward HDHPs and defined contribution health care plans by employers, along with the upcoming implementation of state and federal exchanges, 55% of workers said they had done nothing to prepare for possible changes to the health care system.

To view full article: Consumer-Driven Health Care

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http://healthcare-legislation.blogspot.com/2013/05/are-your-employees-ready-for-consumer.html

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In 2008, Congress passed the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act taking a great step forward in the decade-plus fight to end insurance discrimination against those seeking treatment for mental health and substance use disorders. This law requires health insurance to cover both mental and physical health equally. Under this law, insurance companies can no longer arbitrarily limit the number of hospital days or outpatient treatment sessions, or assign higher co-payments or deductibles for those in need of psychological services.

To view full article: Mental Health Parity


http://www.apa.org/helpcenter/parity-law.aspx

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The 2008 act closes several of the loopholes left by the 1996 Mental Health Parity Act and extends equal coverage to all aspects of health insurance plans, including day and visit limits, dollar limits, coinsurance, co-payments, deductibles and out-of-pocket maximums. It preserves existing state parity and consumer protection laws while extending protection of mental health services to 82 million Americans not protected by state laws. The bill also ensures mental health coverage for both in network and out-of-network services.

To view full article: Mental Health Parity


http://www.apa.org/helpcenter/parity-law.aspx

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What happens if I don’t sign up for Obamacare? You won’t have health insurance. You’ll be responsible for every from

the flu shots to major surgery. I thought I could just sign up when I need it?

Not exactly. The law requires insurance companies to cover people with pre-existing conditions, but you still have to sign up during the enrollment period. That will be from October 1, 2013 to March 31, 2014.

Serious problems in Michigan with delayed Medicaid Expansion and states with no Medicaid expansion

Could a Trustee of SNT Determine to go Without Insurance?

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So what if I get sick after March 31, 2013? You’ll have to wait until the next enrolment period, which begins

October 1, 2014. Until your new coverage kicks in January 1, 2015, you’ll have to pay for any medical costs.

What if I lose my insurance during the year? You can sign up them. Outside of the regular enrollment period,

people can sign up for insurance when they have a major life-changing event (i.e. getting married, changing jobs, having a baby, or moving to a new state)

Could a Trustee of SNT Determine to go Without Insurance? (cont.)

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Are there any penalties for not signing up? Yes, if you don’t sign up for insurance, you’ll pay a fine when you do

you taxes in 2015. The fine will be $95.00 or 1% of your annual income, whichever is higher. And in future years, it will be even higher.

What if I refuse to pay the fine? The IRS will take the money out of any refund you would receive on

your federal income tax. It is not allowed to put you in jail or seize your property for failing to pay the fine, however.

Could a Trustee of SNT Determine to go Without Insurance?(cont.)

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When do I have to sign up? Technically speaking, you need to have insurance on January 1, 2014.

However, the enrollment period lasts until March 31, 2013 and you may be able to sign up later in the year if you have a major life event.

What if I am uninsured for part of the year? You won’t pay the full fine. The amount is prorated, so you would just

pay for the number of months you were uninsured. Also, gaps of less than three (3) months in a given year aren’t counted.


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Are there any other exceptions? Yes, but they are limited. Certain religious groups, such as the Amish,

and federally recognized Indian tribes don’t have to sign up. You can also get exemption if you have a lower income, especially if your state rejected the Medicaid expansion.

Medicare or Medicaid is enough! (Either only Part A Or Parts A & B)

To view full article: Obamacare


http://www.theoaklandpress.com/general-news/20130807/what-happens-if-you-dont-sign-up-for-obamacare

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Medicare isn’t part of the Health Insurance Marketplace, so you don’t need to do anything. If you have Medicare, you are considered covered.

The Marketplace won’t affect your Medicare choices, and your benefits won’t be changing. No matter how you get Medicare, whether through Original Medicare or a Medicare Advantage Plan, you’ll still have the same benefits and security you have now. You won’t have to make any changes.

Medicare’s Open Enrollment Period (October 15-December 7) hasn’t changed.

To view full article: Donut Hole

What if I have Medicare?

https://www.healthcare.gov/if-i-have-medicare-do-i-need-to-do-anything/

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Expanded Medicare benefits for preventive care, drug coverage

Medicare benefits have expanded under the health care law–things like free preventive benefits, cancer screenings, and an annual wellness visit.

You can also save money if you’re in the prescription drug “donut hole” with discounts on brand-name prescription drugs.

To view full article: Donut Hole

ACA Provisions (cont.)

http://www.medicare.gov/coverage/preventive-and-screening-services.html

http://www.medicare.gov/coverage/preventive-and-screening-services.html

http://www.medicare.gov/part-d/costs/coverage-gap/part-d-coverage-gap.html

https://www.healthcare.gov/if-i-have-medicare-do-i-need-to-do-anything/

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The Patient Protection and Affordable Care Act and accompanying health care reform legislation added important improvements to Medicare prescription drug coverage. The health reform law helps cover expenses for people falling into the "donut hole" coverage gap beginning in 2010, and the hole in coverage is eliminated altogether by 2020. The law also provides for additional assistance for low-income beneficiaries.

To view full article: Closing the Donut Hole

Closing the Donut Hole

http://www.ncpssm.org/Medicare/ClosingtheDonutHole

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The new law provides assistance to help seniors bridge this donut hole. 50 percent rebate on brand-name drugs in 2012. A 50 percent rebate will

be applied at the pharmacy for brand name medications. 14 percent rebate on generic drugs in 2012. A 14 percent rebate will be

applied at the pharmacy for generic medications. Closure of the donut hole by 2020 for brand-name and generic drugs. The

co-payments required for brand-name and generic drugs will be phased down to the standard 25 percent by 2020, eliminating the donut hole. For brand-name drugs, manufacturers will increase their discounts each year to negate the coverage gap. Beginning in 2011, co-payments required by Part D law for generic drugs will be reduced by seven percentage points each year until the coverage gap is eliminated for these drugs as well.




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Immediate assistance for seniors. A typical senior that fell into the donut hole saved $250 in 2010, over $600 in 2011, and will save over $3,000 by 2020.

Provides catastrophic coverage sooner to protect seniors. The legislation will help seniors get out of the donut hole sooner beginning in 2014. The dollar amount of the catastrophic threshold, where seniors' co-payments are dropped to 5 percent of drug costs, will be more slowly increased from year to year at this point.




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Assistance for Low-Income People The health reform legislation also provides improves eligibility and coverage

for low-income Medicare beneficiaries: Co-payments are eliminated for many beneficiaries receiving home-

and community-based services who are eligible for both Medicare and Medicaid.

The new law will reduce the number of low-income beneficiaries that are required to change plans each year to maintain zero premiums.

It allows widows and widowers to more easily retain their low-income eligibility.

Outreach programs are enhanced to ensure that more beneficiaries who are eligible for a Low-Income Subsidy are able to enroll.




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1. Medicaid Managed Long Term Services and Supports 2. State Demonstrations to Integrate Care for Dual Eligible Individuals and other

Medicare-Medicaid Coordination Initiatives3. Other Long Term Services and Support Include

A. Balancing Incentive ProgramB. Medicaid State Plan Amendments under 1915(i)C. Community First Choice Option under 1915 (k)D. Medicaid Health Homes

Click here for full site

Other ACA Provisions to Watch

http://www.nasuad.org/medicaid_integration_tracker.html

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Medicaid Managed Long Term Services and Supports

Refers to the delivery of long term services and supports through capitated Medicaid managed care programs.

Increasing numbers of States are using MLTSS as a strategy for expanding home- and community-based services, promoting community inclusion, ensuring quality and increasing efficiency.

MLTSS offers States a broad and flexible set of program design options, and may be used as an overarching structure to promote initiatives such as Money Follows the Person, participant-directed services, the Balancing Incentive Program, etc.

Do you know what your state is doing?


Other ACA Provisions to Watch (cont.)

http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Delivery-Systems/Medicaid-Managed-Long-Term-Services-and-Supports-MLTSS.html

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State Demonstrations to Integrate Care for Dual Eligible Individuals and other Medicare-Medicaid Coordination Initiatives

Under the State Demonstrations to Integrate Care for Dual Eligible Individuals, fifteen states across the country have been selected to design new approaches to better coordinate care for dual eligible individuals.

CMS will provide funding and technical assistance to states to develop person-centered approaches to coordinate care across primary, acute, behavioral health and long-term supports and services for dual eligible individuals. The goal is to identify and validate delivery system and payment coordination models that can be tested and replicated in other states.

CMS is also making technical assistance available to all states interested in improving services for dual eligible individuals.



http://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/StateDemonstrationstoIntegrateCareforDualEligibleIndividuals.html

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Other Long Term Services and Support Include Balancing Incentive Program

Authorizes grants to States to increase access to non-institutional long-term services and supports (LTSS) as of October 1, 2011.

This program will help States transform their long-term care systems by: Lowering costs through improved systems performance & efficiency Creating tools to help consumers with care planning & assessment Improving quality measurement & oversight



http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Support/Balancing/Balancing-Incentive-Program.html

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States with approved applications – New Hampshire, Maryland, Iowa, Mississippi, Missouri, Georgia, Texas, Indiana, Connecticut, Arkansas, New York, New Jersey, Louisiana, Ohio, Maine, Illinois

States with structural change work plans – New Hampshire, Maryland, Missouri, Georgia, Texas, Mississippi, Indiana, Iowa



http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Support/Balancing/Balancing-Incentive-Program.html

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Other Long Term Services and Support Include

Expanded Medicaid State Plan Amendments under 1915(i) Allows states to offer HCBS under a Medicaid state plan to individuals

who are Medicaid-eligible It limits eligibility to individuals with incomes up to 150 percent of

poverty who, but for the program services, would need an institutional level of care



http://www.familiesusa.org/issues/long-term-services/health-reform/changes-to-medicaids-1915.html

http://www.familiesusa.org/issues/long-term-services/health-reform/changes-to-medicaids-1915.html

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Other Long Term Services and Support Include Community First Choice Option under 1915 (k)

Lets States provide home and community-based attendant services to Medicaid enrollees with disabilities under their State Plan

This option became available on October 1, 2011 and provides a 6 % increase in Federal matching payments to States for expenditures related to this option

Community First Choice was established under the Affordable Care Act of 2010



http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Support/Home-and-Community-Based-Services/Community-First-Choice-1915-k.html

http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Support/Home-and-Community-Based-Services/Community-First-Choice-1915-k.html

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Other Long Term Services and Support Include Medicaid Health Homes

Benefit for states to establish Health Homes to coordinate care for people with Medicaid who have chronic conditions by adding Section 1945 of the Social Security Act.

Health Homes are for people with Medicaid who: Have 2 or more chronic conditions Have one chronic condition and are at risk for a second Have one serious and persistent mental health condition States can target health home services geographically States can not exclude people with both Medicaid and Medicare

from health home services Anyone have a client in this program? Appears very, very limited!!



http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Support/Integrating-Care/Health-Homes/Health-Homes.html

http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Support/Integrating-Care/Health-Homes/Health-Homes.html

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Some special needs trust are employers By October 1, 2013, employers who are subject to the Fair Labor

Standards Act (FLSA) must produce and distribute notices to employees about the health insurance exchanges (also known as marketplaces) that will become effective in January 2014 (see FLSA Sec. 18B).

These notices were originally required to be distributed by March 1, 2013. However, in January 2013, the Department of Labor (DOL) delayed this requirement until it had time to issue further guidance. On May 8, 2013, the DOL’s Employee Benefits Security Administration (EBSA) issued Technical Release 2013-02, which specifies that these notices must now be provided by the first of October

For full article: Health Reform Talk

Warning - ACA Provisions

http://healthcare-legislation.blogspot.com/2013/08/your-health-insurance-exchanges-notices.html

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The Employee Benefits Security Administration (EBSA) has issued a Frequently Asked Question (FAQ) stating that employers will not be fined for failing to provide, by Oct. 1, 2013, written notices to their employees about the health insurance Marketplace, as mandated by the Patient Protection and Affordable Care Act (ACA). According to the EBSA, companies covered by the Fair Labor Standards Act should provide such written notices, but there will be no fine or penalty imposed if they do not.

For full article: Health Reform Talk – No Fines

No Fines for Employers that Fail to Comply with Certain ACA Notice

Provisions

http://healthcare-legislation.blogspot.com/2013/09/no-fines-for-employers-that-fail-to.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+HealthReformTalk+(Health+Reform+Talk)

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New Jersey Law Journal – Health Care Law: ACA’s Impact on the Elderly and Individuals with Special Needs

The Affordable Care Act – A side-by –side comparison of major provisions and the implications for children and youth with special needs.


http://www.spsk.com/tasks/sites/spsk2/assets/Image/Whitenack%20Edwards%209.9.13.pdf

http://hdwg.org/sites/default/files/ACAsidebyside-catalystctr.pdf

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The American Taxpayer Relief Act (the so-called "fiscal-cliff" law) repealed the CLASS Act and established a Long-Term Care Commission to advise Congress on how long-term care can be better provided and financed for the nation's older adults and people with disabilities, now and in the future.

The bi-partisan commission consists of 15 appointees appointed by Democratic and Republican Congressional leadership and the White House.

The LTC Commission Establishment

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Charged by statute to report with a "plan for the establishment, implementation, and financing of a comprehensive, coordinated, and high-quality system that ensures the availability of long-term services and supports for individuals in need."

Within 6 months of the appointment of Commissioners (by September 12, 2013) they must vote on a comprehensive and detailed report based on the long-term care plan that contains any recommendations or proposals for legislative or administrative action as the Commission deems appropriate.

For more information: Long-Term Care Commission Website

The LTC Commission Objective

http://www.ltccommission.senate.gov/

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Washington, DC – Yesterday the federal Commission on Long-Term Care completed its work on a package of recommendations to be included in its Final Report on long-term services and supports to be published by September 30. Per statutory requirements requiring a vote on September 12th, a majority of Commissioners from appointee offices on both sides of the political aisle voted in favor of a package of recommendations to be submitted to Congress, which seeks to renew a national discussion on addressing the issues and challenges that millions of Americans and their families face.Since beginning its work on June 10th, the Commission developed a series of recommendations as well as potential financing frameworks reflecting the diversity of opinions on the Commission on how to best to deliver and finance needed long-term services and supports. The full list of ideas that were considered will appear as an appendix in the Final Report.

View Full Press Release: Press Release

Federal Commission on Long-Term Care

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The authors of this statement acknowledge the efforts of the entire Commission and staff. But, given the unusually compressed timeframe for our work, the final report does not fulfill this charge.

We issue this statement to express our shared vision of what is necessary to meet Congress’s mandate to establish and finance a high-quality, comprehensive LTSS system for Americans who need such services. The authors’ vision is to create such an inclusive LTSS system for people of all ages – a system that will meet individual’s functional and cognitive support needs with quality care in the least restrictive setting. We are convinced that no real improvements to the current insufficient, disjointed array of LTSS and financing can be expected without committing significant resources, instituting federal requirements, and developing social insurance financing.

View Full Summary: Commission on Long-Term Care

After a near 100 day working period, the Commission approved this Final Report, by a vote of 9-to-6, on September 12, 2013.

A Comprehensive Approach to Long-Term Services & Support

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Washington, DC (September 18, 2313) Henry Claypool, Executive Vice President of AAPD, released the following

statement in reaction to the final recommendations of the federal Commission on Long-Term Care:

“It was an honor to be appointed to the Commission by the President and serve with my fellow Commissioners on this critical and complicated issue that will only become more important as the US population ages. AAPD looks forward to advancing our specific proposals that will strengthen Medicaid and provide new ways to access LTSS for Americans with disabilities.”

Last week the federal Commission on Long-Term Care voted 9-6 on its final recommendations. Commissioner Claypool voted against the Commission’s report.

Press Release: Statement by Henry Claypool, Executive Vice President of AAPD, on Federal Commission on Long-Term Care

Executive VP of AAPD, on Federal Commission on Long-Term Care

http://www.aapd.com/resources/press-room/statement-by-henry-claypool.html

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Commissioner Claypool proposed five other recommendations to the Commission including:• Pilot a program for workers with significant disabilities who need LTSS to remain employed without being subject to income and asset limits like those in the Medicaid program• Provide enhanced options counseling to help individuals better navigate LTSS in a “One-Stop-Shop/No Wrong Door (NWD)” modeled after the “Enhanced Aging and Disability Resource Centers (ADRCs) Options Counseling Program” initiative• Create a national Medicaid buy-in (MBI) program for workers with significant disabilities who have modest earnings



http://www.aapd.com/resources/alternative-report.pdf


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Commissioner Claypool proposed five other recommendations to the Commission including (cont):

• Amend Section 529 of the IRS code to allow for a tax-advantaged savings account to address the unique needs of families with individuals with disabilities who are waiting for Medicaid home- and community-based services• Extend existing financial incentives to states and streamline the home- and community-based services provision of the Medicaid statue to address the institutional bias in Medicaid

For the full detail of these recommendations, please go here.






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These recommendations are included in an alternative report soon to be released that will highlight the need for a public LTSS health insurance program. The alternative report is a compilation of different recommendations by Commissioners Henry Claypool; Judith Stein, Founder & Executive Director, Center for Medicare Advocacy, Inc.; Laphonza Butler, President, SEIU-ULTCW; Lynnae Ruttledge; and Judy Feder, Urban Institute Fellow and Professor, Georgetown Public Policy Institute.




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Legal Advocacy & Litigation

iBudgetMedicaid Mental

Health

Fair Housing

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DRW and its co-counsel just filed a proposed settlement with the federal district court in a statewide class action affecting tens of thousands of children with intensive mental health needs who use Medicaid insurance.

The settlement, agreed upon by plaintiffs for the youth class members and the Washington Department of Social and Health Services and Health Care Authority, must now be approved by US District Court Judge Thomas Zilly.

The lawsuit was brought due to a lack of adequate treatment for children and youth with mental illness which often led to the youth cycling in and out of hospitals, foster care and the juvenile justice system. Youth from around the state stood up to demand a change.

“I had to leave my home and family years ago to get the treatment I needed,” said Tina Fricke, one of ten youth who filed the lawsuit.

Excerpt from: Settlement Would Overhaul Medicaid Mental Health for Youth

Settlement Would Overhaul Medicaid Mental Health for Youth

(In the state of Washington)

http://www.disabilityrightswa.org/civicrm/mailing/view?reset=1&id=59

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In a 29-page ruling issued Monday, Judge R. Bruce McKibben said the agency has properly carried out a 2010 law requiring what are known as "iBudgets" in determining how much money people will receive for services. The decision came in a rules challenge filed on behalf of four developmentally disabled people, identified only by their initials for privacy reasons, who face funding cuts under the iBudget system.

Excerpt from: Judge Backs State in IBudget Fight

Judge Backs State of Florida in “IBudget” Fight

http://www.floridatoday.com/viewart/20130910/NEWS01/130910010/Judge-backs-state-IBudget-fight



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The basic thrust of the iBudgets is to provide set amounts of money to people, depending on their needs, and then give them flexibility in how the money is spent on services. That differs from past waiver systems that required money to be spent on specific services.


Judge Backs State of Florida in “IBudget” Fight




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But it also has led to about 40 percent of people seeing reductions in "cost plans" that help drive how much money they receive. That has led people to file appeals in a hearing process and to challenge the agency in the state Division of Administrative Hearings, where Monday's ruling was issued.


Judge Backs State of Flordia in “IBudget” Fight




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The lawsuit, filed in the U.S. District Court for the Western District of Washington, alleges that Linda Barber, Bert Barber and Lori Thompson engaged in a pattern or practice of violating the Fair Housing Act or denied rights protected by the Act. Specifically, the lawsuit asserts that the defendants established and implemented a discriminatory policy that allowed waiver of the defendants’ mandatory $1,000 “pet deposit” for service animals with specialized training, but not for other assistance animals, including emotional support animals. The suit also alleges that, by refusing a tenant’s requests for a reasonable accommodation to waive the $1,000 pet deposit for her assistance animal, the defendants violated the Fair Housing Act.

Excerpt from: Justice Department Files Fair Housing Lawsuit Against Owners and Managers of Rental Homes in Washington State for Discrimination Against Persons with Disabilities

Fair Housing & Services

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For over four decades, the Bazelon Center has taken on issues and cases that move the nation forward to guarantee rights, consumer choice, access to services, and autonomy to people with mental disabilities.

In recent years, a significant portion of our work has focused on fulfilling the mandate that public systems support the true integration of people with mental disabilities, as set forth in the landmark 1999 U.S. Supreme Court decision Olmsteadv. L.C.

In FY 2012, our staff achieved watershed victories in two Olmstead cases, in addition to our other litigation across the country and related policy work.

Excerpt from: Bazelon Center in Brief & Annual Report Summer 2013

Improving Lives Through Legal Advocacy

http://www.bazelon.org/LinkClick.aspx?fileticket=ls7fu3eKz7A=&tabid=58

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DOJ Findings Letter to Florida (September 2012) The United States issued a Findings Letter in September 2012 concluding that Florida is violating the ADA's integration mandate in its provision of services and supports to children with medically complex and medically fragile conditions. After a comprehensive investigation, the Department found that the State of Florida plans, structures, and administers a system of care that has led to the unnecessary institutionalization of children in nursing facilities and places children currently residing in the community at risk of unnecessary institutionalization.

Excerpt from: DOJ Accuses Florida of Violating ADA

DOJ Accuses Florida of Violating ADA - Olmstead

http://www.ada.gov/olmstead/olmstead_cases_list2.htm#florida_lof

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It was billed as a celebration of the landmark federal law intended to make sure disabled people have equal access to public facilities.

But the site in Flint chosen to celebrate the 23rd birthday of the Americans with Disabilities Act, Kearsley Park did not meet requirements of the ADA.

A wooden ramp had unsafe railings, broken planks and protruding bolts. Sidewalks weren’t level. A playground area was inaccessible. People who used wheelchairs had to roll across grass to reach portable toilets that lacked raised signage for the blind.

View Full Article: Michigan’s Non-Compliance with Law

Americas with Disabilities Act Highlights Michigan’s Non-

Compliance with Law

http://www.freep.com/article/20130916/NEWS/309160014/Americans-with-Disability-Act-Kearsley-Park-Flint

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On August 13, 2013 all nursing homes receiving Medicaid or Medicare money were required to be fully sprinklered. Almost 1,200 failed to meet that requirement, despite having had five (5) years to get sprinklers installed.

Residents in facilities that are only partially sprinklered or not sprinklered at all are at serious risk of injury and death by fire. Despite this danger, the Centers for Medicare & Medicaid Services (CMS) is not taking immediate and forceful action.

It is time for some citizen action. Help us motivate nursing homes to come into compliance by calling them out on their lack of sprinklers. Find out what nursing homes in your town, area or state are not fully sprinklered by visiting our Hall of Flame

Excerpt from: Hall of Flame

Nursing Home Safety

http://www.theconsumervoice.org/HallOfFlame

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Exactly 10 years ago this month, 15 residents were killed in an unsprinklered home in Tennessee. Today, residents in the approximately 1,200 unsprinklered or partially sprinklered nursing homes could suffer the same fate in a fire situation.

Protect current and future residents by letting the public know which nursing homes lack critical fire safety protections!

Excerpt from: Hall of Flame

Nursing Home Safety

http://www.theconsumervoice.org/HallOfFlame

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A landmark case in which the United States Supreme Court held that restricting U.S. federal interpretation of "marriage" and "spouse" to apply only to heterosexual unions, by Section 3 of the Defense of Marriage Act (DOMA), is unconstitutional under the Due Process Clause of the Fifth Amendement.

Edith Windsor and Thea Spyer, a same-sex couple residing in New York, were lawfully married in Ontario, Canada in 2007. Spyer died in 2009, leaving her entire estate to Windsor. Windsor sought to claim the federal estate tax exemption for surviving spouses. She was barred from doing so by Section 3 of, which provided that the term "spouse" only applies to a marriage between a man and woman. The Internal Revenue Service found that the exemption did not apply to same-sex marriages, denied Windsor's claim, and compelled her to pay $363,053 in estate taxes.

On June 26, 2013, the U.S. Supreme Court ruled that section three of the so-called "Defense of Marriage Act" (DOMA) is unconstitutional and that the federal government cannot discriminate against married lesbian and gay couples for the purposes of determining federal benefits and protections.

See: Supreme Court v Windsor

United States vs. Windsor

http://www.supremecourt.gov/opinions/12pdf/12-307_6j37.pdf

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Cindy Mann, Esq. Deputy Administrator/Director Center for Medicare & Medicaid Services 7500 Security Blvd., Mail Stop S2-2612 Baltimore, MD 21244-1850

Dear Ms. Mann: The National Academy of Elder Law Attorneys writes in support of Attorney Stephanie Schneider’s request that the Center for Medicare & Medicaid Services amend its rules to comply with the United States Supreme Court’s decision in United States v. Windsor, No. 12-037, slip op. (U.S. Jun. 26, 2013). Specifically, NAELA requests that CMS instruct the states to implement spousal impoverishment protections for same-sex married couples. We fully understand that this is a divisive issue politically. NAELA makes this request in the interests of clarity and with the desire to ensure that rules for federal programs are applied fairly. Whatever one’s feelings about the Windsor decision, it is fundamentally unfair to allow states that participate in a federal program to apply different rules as to who is a spouse. Moreover, this inconsistency makes it extremely difficult to assist clients in planning for their retirement or future long-term care needs, especially taking into account the Constitutional right to travel. Several other federal agencies have already issued new rules to comply with the Windsor decision. NAELA stands ready to assist CMS in its efforts to do the same.

Sincerely, Howard S. Krooks, CAP, CELA Peter G. Wacht, CAE President Executive Director

NAELA is not taking a position on the court’s ruling; rather, we’re simply seeking greater clarity following the decision so that our members can better advise their clients.

The American Association of People with Disabilities (AAPD), the nation’s largest disability rights organization, released the following statement in support of the new rule that will ensure wage and hour protections for in-home workers. The new rule updates the companionship services exemption that was misinterpreted to exclude in-home workers such as home health aides from wage and hour protections.

Press Release:AAPD Supports New Rule

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AAPD Supports New Rule to Ensure Wage and Hour Protections for In-

Home Workers

http://www.dol.gov/opa/media/press/whd/WHD20131922.htm

http://www.aapd.com/resources/press-room/aapd-supports-new-rule-to.html

Implementation must minimize disruption to the consumer directed services that people with disabilities utilize in order to live meaningful lives.

Rule will Benefit People with Disabilities Ultimately, more Americans with disabilities will be able to live independently if a

highly skilled, appropriately compensated, home care workforce is in place over the coming years. An expanded workforce will increase the choices people with disabilities have as they seek qualified individuals to provide the services and supports they need to lead meaningful lives in the community. It will also ensure that these workers can support their own families - a simple matter of fairness. Overall, as these changes take hold, they will positively impact the lives of people with disabilities.

Press Release:AAPD Supports New Rule 102

AAPD Supports New Rule to Ensure Wage and Hour Protections for In-

Home Workers

http://www.aapd.com/resources/press-room/aapd-supports-new-rule-to.html

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Tax Change for the SNTs

SNT’s Tax Hikes

Digital Legacy

When Congress passed the President’s health care reform initiative in March of 2010, the legislation came in two separate bills. First came the Patient Protection and Affordable Care Act (PPACA), followed by the Health Care and Education Reconciliation Act (HCERA) several days later. One focus of the HCERA was to implement the tax provisions designed to pay for healthcare reform. Several cases are pending in various federal courts challenging the constitutionality of the PPACA, but even if the courts eventually were to declare the PPACA to be unconstitutional, the non-insurance tax provisions in the HCERA will apply to taxpayers, including the disabled beneficiaries of special needs trusts (SNTs) and/or SNTs themselves. Like most taxes, the financial impact of the new tax in the HCERA can be minimized with proper planning. What follows is a very brief overview of the new tax, some general planning opportunities, and a brief discussion on how the tax will apply to SNTs.

Full article: The New Medicare Surtax: Will You or Your Special Needs Trust Be Affected in 2013?Begley, Jr., Thomas. "News." The New Medicare Surtax: Will You or Your Special Needs Trust Be Affected in 2013?.

Begley Law Group, Unknown date. Web. 9 September 2013.

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Will You or Your SNT Be Affected in 2013?

http://www.begleylawyer.com/2011/09/the-new-medicare-surtax-will-you-or-your-special-needs-trust-be-affected-in-2013/

Folks with trusts, and that includes widows and the disabled, not just the ultra-wealthy, have been hit with a double tax whammy this year.

First the 3.8% Obamacare tax that applies to net investment income kicked in Jan. 1.

Then, the American Taxpayer Relief Act was signed into law on Jan. 2, imposing income and capital gains tax hikes on trusts akin to those on the wealthiest taxpayers. The top income tax rate is now 39.6%, up from 35%, and the top capital gains rate is now 20%, up from 15%.

The kicker: these taxes hit a trust on any income it does not distribute over just $11,950, far less than the $400,000/$450,000 ATRA and $200,000/$250,000 Obamacare thresholds for individuals.

Full article: Tax Hikes Hit Trust Hard, Beneficiaries Pull Money OutEbeling, Ashlea. "Tax Hikes Hit Trusts Hard, Beneficiaries Pull Money Out." Forbes. Forbes Magazine,

09 Jan. 2013. Web. 09 Sept. 2013.

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Tax Hikes Hit Trust Hard

http://www.forbes.com/sites/ashleaebeling/2013/01/09/tax-hikes-hit-trusts-hard-beneficiaries-pull-money-out/

Most trusts (non-grantor trusts) pay tax on capital gains and accumulated income that stays in the trust, while the beneficiaries pay tax on income that is distributed to them. So trusts—even relatively small ones—will be hit with the 23.8% capital gains rate (the 20% rate plus the 3.8% Obamacare tax), even if the beneficiary himself would be squarely in 15% capital gains territory.

Many trust beneficiaries are ultra-wealthy and can easily bear the extra tax, but many middle-class folks have set up trusts for basic estate planning as well as non-tax reasons, and they’ll be swept into the higher tax regime too.


09 Jan. 2013. Web. 09 Sept. 2013.

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Tax Hikes Hit Trust Hard (cont.)


The income tax hikes call for more advanced and time-sensitive planning. For many trusts it’s left to the trustee’s discretion whether or not to distribute income to any or some of the beneficiaries, and there’s always been a tension between leaving money in the trust to grow for future generations and paying out to current beneficiaries today.

The Internal Revenue Service allows a 65-day grace period (through March 6, 2013 this year) to take distributable net income out of the trust and treat it as distributed in 2012. Given the new high rates, it may make sense to accelerate income distributions to the extent there is undistributed income in the trust.

For high-income beneficiaries who have an immediate need for the money, making the distribution in the window would lock in the 2012 individual tax rates, saving 4.6%, or more because the healthcare tax does not apply in 2012

Full article: Tax Hikes Hit Trust Hard, Beneficiaries Pull Money OutEbeling, Ashlea. "Tax Hikes Hit Trusts Hard, Beneficiaries Pull Money Out." Forbes. Forbes Magazine, 09 Jan.

2013. Web. 09 Sept. 2013.

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Some families might even decide to dissolve existing trusts. A widow in her 80s who is living off a $1 million trust left by her late husband doesn’t need it for estate planning purposes any more.

Before you rip up a trust, consider whether it’s needed to shield you from state estate and inheritance taxes, for adult children who aren’t great with money or may have a disability, or for protection from divorcing spouses and other creditors.

And what if you’re thinking of setting up a new trust? Make sure you have flexibility written in.


09 Jan. 2013. Web. 09 Sept. 2013.

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Trust do have returns and deductions The IRS gives taxable trusts a $600 deduction. If a trust fund is small

enough, keep the interest income less than $600 per year in order to avoid having to file a trust tax return.

Trust payout avoid trust tax Trusts generally get an income tax deduction for all of the money which

they distribute to a beneficiary or pay for the beneficiary's treatment, support or needs.

Try tax-free trust assets Income received by a trust from investing in a tax-free source keeps its

"character" and is tax-free to the beneficiary when it is spent for their needs.

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Knowing a Little about how SNTs are Taxed Can Be Helpful

Watch the year end and plan ahead Spend down all trust income by December 31st each year. Currently, Trusts

pay about a 38% federal tax on income that the trust accumulates and does not spend on behalf of a beneficiary. Your state income tax can increase this burden.

It helps to prepay taxes The trust can make estimated income tax deposits on Form ES1040 and

transfer the benefit of those income tax prepayments to your beneficiary.

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A Double deduction Congress did add a special provision to the tax code for qualified disability

trusts. It is found in section 642 and can be helpful to a SNT trust provided the trust is not a “Grantor" trust.

Have the trust hire a helper A trust may pay employees on behalf of the special needs beneficiary,

including an accountant!!

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Boutique accounting, medical and legal firms that resisted offering insurance to their employees under the new health-care law may changes their minds when the tax advantages go up next year. Companies with 10 full-time employees or less, making an average wage of $25,000 or less, may get a 50 percent tax credit for the amount of their contribution to cover premiums in 2014, Bloomberg BNA reported. Nonprofit employers can get 35 percent, the Internal Revenue Service said in its proposed rules.

Full article: Affordable Care Act Sees More Employers Embracing Credits

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Affordable Care Act Sees More Employers Embracing Credits

http://www.kaiserhealthnews.org/Daily-Reports/2013/September/05/health-law-policy-issues.aspx

Visualizing Health Policy: Premium Subsidy Scenarios Under Obamacare

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http://kff.org/infographic/visualizing-health-policy-premium-subsidy-scenarios-under-obamacare/

http://kff.org/infographic/visualizing-health-policy-premium-subsidy-scenarios-under-obamacare/

When a person becomes incapacitated or after a person dies, there are significant challenges that fiduciaries and family members face when dealing with that person’s smartphones, computers, electronically stored information, online accounts, Internet domain names, and other digital property. The first challenges are finding the person’s digital property and identifying which digital property is valuable or significant. Then, fiduciaries have several additional, significant digital property obstacles to overcome, including: (1) passwords; (2) encryption; (3) federal and state criminal laws that penalize “unauthorized access” to computers and data (including the Computer Fraud and Abuse Act); and (4) federal and state data privacy laws (including the Stored Communications Act).

Full article: List of State Laws Regarding Fiduciary Access to Digital Property During Incapacity or After Death

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Digital Legacy

http://uscode.house.gov/view.xhtml?req=(title:18%20section:1030%20edition:prelim)%20OR%20(granuleid:USC-prelim-title18-section1030)&f=treesort&edition=prelim&num=0&jumpTo=true

http://uscode.house.gov/view.xhtml?path=/prelim@title18/part1/chapter121&edition=prelim

Uniform Law Commission Approved a study committee on fiduciary power and authority to access digital

property and online accounts during incapacity and after death in April 2012◦ Charge with “considering and making recommendations concerning the need for

and feasibility of drafting a uniform act on the authority and powers of a fiduciary to access digital information related to a decedent’s estate or the affairs of an incapacitated individual”

Conclusions reached by committee in June 18,2012:◦ Project has “considerable merit” and should move forward to a drafting

committee as soon as possible because many other states have already formed study committees to look at this issue (Nebraska and Oregon)

◦ Recommended that the committee be allowed to draft an act to facilitate access by a fiduciary to digital assets, giving due consideration to the relationship of the statute to existing contracts and to federal law

◦ Drafting committee should define digital assets in a way that matches with existing legislation but can also function as a stand-alone definition

◦ The committee suggested that the primary focus be on access by the fiduciaries115

Interested in what the ULC is up to?

The drafting committee will have a page on the ULC website (uniformlaws.org)

Information will be available from the Twitter handle @uniformlaws There will also be a Facebook page regarding upcoming meetings, issues,

and available drafts

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Please visit my website to see PowerPoint presentations regarding:

ACA’s Effect on Medicaid Practice Estate Planning in the Digital Age Special Needs Trusts The Future of Special Needs Trust Under the ACA Using Estate Planning Tools to Allow for Medicare Planning

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For More Information

http://www.pekdadvocacy.com/pattis-powerpoint-presentations/acas-effect-on-medicaid-practice/

http://www.pekdadvocacy.com/pattis-powerpoint-presentations/estate-planning-in-the-digital-age/

http://www.pekdadvocacy.com/pattis-powerpoint-presentations/special-needs-trust/

http://www.pekdadvocacy.com/pattis-powerpoint-presentations/the-future-of-special-needs-trust-under-the-aca/

http://www.pekdadvocacy.com/pattis-powerpoint-presentations/using-estate-planning-tools-to-allow-for-medicaid-planning/

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