A. MEDICAID

In order to pay for President Trumps "big beautiful bill" that will in large part cut taxes for the wealthy even more than the tax cuts from his first term, legislators in the House and Senate must find large spending cuts. President Trump has "pledged" not to cut Social Security, Medicare and Medicaid, and many representatives and senators have said the same. BUT Despite these promises, the simple reality of the federal budget puts certain entitlement programs in the crosshairs of legislators. Cuts to defense are a non-starter and cuts to Social Security and Medicare would undoubtedly be political poison for legislators. But Medicaid, which provides vital health care and essential services to disabled individuals and other financially disadvantaged populations, is very vulnerable and may be severely cut. The House Energy and Commerce Committee has been instructed to find $880 Billion in savings and Medicaid programs are the primary target for cuts. There is talk that the final number may be less, and much discussion about the elimination of only fraud and waste. Stakeholders should not be fooled. Clearly, essential programs and services for the developmentally disabled community are at risk, particularly home and community-based services. The Energy and Commerce Committee will begin its markup of its portion of the bill in coming days. Make your voice heard and protect the vital services of disabled individuals. Call and write your representatives in Congress now.

B. WITH FRIENDS LIKE THESE

Last week, the White House unveiled its budget summary, called a "skinny budget" which asks Congress to slash funding for non-defense discretionary spending by 22.6% in the next fiscal year. This type of spending does not involve Social Security, Medicare and Medicaid. But this spending does fund programs critical to the developmentally disabled community. From information released by the Department of Health and Human Services ("HHS"), it is clear that the spending cuts the Trump administration is requesting would eliminate funding for, among other things, protection and advocacy agencies (P & A's) for the disabled, state councils on developmental disabilities, the lifespan respite program and other key programs for the disabled. All of the programs included with the Administration for Community Living are at risk because HHS has disclosed that it wants to shutter this agency entirely. According to HHS Secretary Robert F. Kennedy, when speaking about his overall restructuring that eliminates departments and agencies while purporting to preserve core functions, "We’re going to do more with less." It is hard to see how cutting funding, eliminating programs and closing essential agencies will result in 'more' for the community of disabled individuals. The words being said and the explanations offered don’t add up to the severe actions being taken and the money being withdrawn. SPEAK UP ADVOCATE FOR YOUR LOVED ONES

C. NEW YORK STATE ED UPDATE

Within the past two weeks, Marna participated in a New York State Education Department virtual briefing regarding funding of programs for the developmentally disabled. According to the State Ed representatives, as of the end of April there has been no change in federal funding to New York State for Medicaid and other essential programs. State Ed advised that they are carefully monitoring the situation, as is Marna.

Article 17-A of the Surrogate’s Court Procedure Act was enacted in 1969-a time when  individuals with intellectual and developmental disabilities over the age of 18 were viewed and treated as children with limited ability and potential. We now know how wrong and shortsighted that view is. During the past 55 years we have developed a better understanding of the needs of individuals with intellectual and developmental disabilities and the supports and services they require.  As a result of early intervention and diagnosis, improvements in the special education system combined with effective behavioral, social and vocational supports, individuals with disabilities have the opportunity to learn and acquire the skills they will need to live productive and fulfilling lives in the community. Simply because an individual has a disability does not mean that he or she is not capable of expressing preferences and making decisions on how they want to live their life. In fact the trend  now is to recognize those preferences and incorporate them into a person centered “life plan” which set forth a person’s goals and  the supports and services needed to attain them. As a result of the evolving views and legal treatment of individuals with disabilities during the past 55 years the almost total power granted to the 17-A guardian is viewed quite differently today. The current form of Article 17-A guardianship, however, takes away all of the individual’s rights based upon a bare bones factual analysis of their actual abilities, and it does so with precious little due process afforded to them. It is not surprising, then, that stakeholders in the disability community have re-examined 17-A guardianship. In recent years, the Surrogate’s Courts have required more evidence such as the submission of recent psychological evaluations, IEP’s and ISP’s for the individuals who are under consideration. Legislative proposals have also been developed to amend the Section 17-A statute and to fully consider all aspects off the disabled individual’s functioning during the guardianship process. These proposals would enhance due process and participation for individuals and would require that more evidence be taken. A clearer and more stringent standard for the Surrogates to apply would also be put in place. The Surrogates would also be granted the power to tailor the 17-A guardianship to the actual needs of the individual so it would be a less restrictive form of intervention.

Article 17-A of the Surrogate’s Court Procedure Act (“Article 17-A”) was enacted in 1969 in response to advocacy from parents seeking to protect their children with intellectual or developmental disabilities as they reached adulthood and throughout their lives. In addition, there was a movement in New York at that time to deinstitutionalize individuals with disabilities so that they could live their lives in the community and no longer be confined to an in patient facility. Article 17-A gave the New York Surrogates the power to appoint a guardian for the “person” and/or the “property” of a disabled person over the age of 18. Guardianship of the person means that the guardian controls all personal decisions such as health care, place of living, education, adult programming and the like. Guardianship of the property gives the guardian complete control of the person’s assets and the ability to make all financial decisions on their behalf. A 17-A guardianship is referred to by the term “plenary”, which is a fancy legal way of saying that 17-A guardianship is all encompassing or absolute. Under the current statute, a 17-A guardianship cannot be limited or tailored to be less restrictive to meet the needs of the person with a disability. In fact, the guardianship process under Section 17-A is purely diagnosis driven and does not ask for much information regarding an individual’s adaptive living skills and daily level of functioning. Nor does the guardianship process meaningfully examine the person’s understanding and management of his or her finances. A petition for the appointment of a guardian of the person and property of an individual who is intellectually or developmentally disabled is typically filed by a parent or any interested person over the age of 18, including an authorized corporation, in a New York State Surrogate’s Court in the county where the person with a disability resides. The petition consists of a standard form that asks for very basic personal information. The petitioners must also submit 2 certificates from either 2 physicians or a physician and a licensed psychologist. On the forms the doctors must describe the disability of the person and state (a) whether the person under an intellectual or developmental disability is capable of managing his or her personal and financial affairs; and (b) whether the person’s condition is permanent or likely to continue indefinitely. Many doctors resent having to complete the forms and they often provide the bare minimum of the information called for, giving the Surrogate’s Court a very limited picture of an individual’s abilities and level of functioning. Because of this many Surrogates ask for an IEP or a psychological evaluation in order to get a better idea of an individual’s cognitive ability and adaptive living skills. Based on the above information and using a standard of the “best interests” of the individual, the Surrogate decides whether appointment of a guardian is appropriate. Testimony is rarely ever taken in Court. In some jurisdictions no appearance by the individual being considered for guardianship is even required, though that is changing in many counties. For many years it was very unusual for a guardianship to be terminated by the Surrogate’s Court once it was granted. Recently, however more judges have been willing to terminate a 17-A guardianship if it can be demonstrated that the individual has made significant progress in managing his or her affairs and has an adequate support system in place to assist them with making significant medical, financial and personal decisions. That process, however, requires a new petition to be filed in Surrogate’s Court and involves evidence and testimony being presented, all at more expense to families. Next Post:  The pros and cons of Section 17-A and the future legislative outlook

Current Law and Proposed Changes

In a series of posts that will appear in this space every two weeks over the next several months, Marna Solarsh will deliver to families a guide to legal guardianship in New York as well as other available alternatives under New York Law. Marna will cover:

• Article 17-A Guardianship (Surrogate’s Court Procedure Act)
• Article 81 Guardianship (Mental Hygiene Law)
• Supported Decision Making
• Powers of Attorney, Health Care Proxies and Able Accounts
• Rep Payee Accounts and the Family Health Care Decisions Act

Next Posts: Article 17-A Guardianship The current law of guardianship for those with developmental and intellectual disabilities has been in effect for decades. In many respects Article 17-A guardianship is severely flawed and violates the due process rights of those it seeks to protect. Marna’s next two posts will review the current law, and she will then discuss a major legislative overhaul of Article 17-A that has been proposed by the Committee on Disability Rights of the New York Bar State Association Committee and other advocacy groups.

Until recently child support for all children in New York State ended at age 21 whether or not a child could be self-supporting. Forty other states allowed a custodial parent to pursue child support for adult children with disabilities up to age 26. New York has now joined those other states. In October 2021, the New York Domestic Relations Law was amended to allow parents with custody or other caregivers of children with developmental disabilities to ask the Court to order that child support payments be made until age 26. The amendment to the law requires that the child be diagnosed with a developmental disability that originated before age 22 and that is expected to continue indefinitely. The Court must also find that the condition will substantially handicap the child’s ability to function in society. The Court has discretion to make an award based on certain standards in the new law and prior child support orders can be modified to reflect a new award. Payments can be made directly to a parent or care giver, or to the trustee of an “exception trust”, typically a special needs trust for the child. This change in the Domestic Relations Law will have substantial benefits for parents of children with developmental disabilities who now receive or will receive child support payments. As parents who have adult children with disabilities know only too well, once a child graduates from school at age 21, the world of adult services is very different and not in a good way. Quality adult programs for those with developmental disabilities are difficult to find, often oversubscribed and rarely last for a full day. Parents of these adult children are left to fend for themselves and the quality of life for the child can suffer. The additional support that the new law provides will be most welcome and sorely needed. It will assist parents with the difficult transition to adult services.