Last week the US Supreme Court, without any explanation, authorized the Trump Administration, to move forward with massive cuts to the Department of Education, laying off 1,400 employees. According to the White House, the lay offs are a first step in a plan to return education authority to the states. The Department of Ed layoffs will have serious negative effects upon students with disabilities. The director of the National Center for Learning Disabilities stated that "this unprecedented move will severely hamper the department’s ability to do its essential functions like safeguarding the civil rights of students with disabilities." The Department of Ed cuts have already impacted civil rights investigations. The Department’s Office for Civil Rights handles disability discrimination complaints in schools. Seven of twelve of the civil rights offices have already been closed. According to another expert, "school districts will be further emboldened to violate the rights of students with disabilities… knowing that the Department of Education has no staff to hold them accountable." There may be even greater and more disturbing changes ahead. President Trump has frequently stated that he wants to shut down the Department of Education entirely and move special education oversight to the Department of Health and Human Services. If that were to happen HHS Secretary Robert F. Kennedy Jr., the autism conspiracy and anti-vaccine guy himself, would be in charge of special education. Not exactly something that will enable members of the disabled community to sleep well at night! The Individuals with Disabilities Education Act (IDEA) is the cornerstone legislation that has yielded all of the advances that disabled individuals have made for the last several decades. There are 7.5 million students covered by the IDEA. The potential shift of IDEA administration to HHS has disability and special ed advocates up in arms. More than a dozen former Department of Education officials who worked with the IDEA under both Republican and Democratic administrations wrote to Congress urging legislators to maintain IDEA administration in the Department of Ed. The potential move of IDEA administration to HHS is likely illegal, but when has that stopped the Trump Administration? Further developments at the Department of Education and with IDEA need to be closely monitored by all stakeholders in the disabled community.

The White House maintains that the approximately $1 Trillion in Medicaid cuts that were made under the recently passed "One Big Beautiful Bill" will not limit home and community based care for the disabled. Health Care experts beg to differ. Under Federal Law, most of the home care and community-based services are considered optional, so when states receive less money under the overall Medicaid scheme, and states have to cut back, home care and community-based services are often targeted for cuts. The White House maintains that states can make up any funding gaps by cutting hospital reimbursements. Again, health experts report that lower hospital reimbursements will not be sufficient to make up the funding cuts for community-based and home care for the disabled. Dr. Benjamin Sommers, a Harvard professor of health care economics called the White House position wishful thinking. Once again, the Republicans are gaslighting the public and extending tax breaks to the rich at the expense of the disabled and the poor. Home care allows severely disabled people to live at home and receive the aid that they require. Community-based programs enable countless disabled individuals to live richer, meaningful and productive lives, Termination of these programs will make it difficult for many to survive and it will shutter key community programs. Read the NY Times article and SPEAK OUT. If you read the post below you will see that sometimes pressure works! TRUMP ADMINISTRATION DELAYS EFFORT TO ROLL BACK FEDERAL DISABILITY RIGHTS PROTECTIONS https://www.disabilityscoop.com/2025/07/21/trump-administration-delays-effort-to-roll-back-federal-disability-rights-protections/31546/ As part of its comprehensive effort to gut significant parts of the federal government, the Department of Energy had announced that it would rescind the requirements under Section 504 of the Rehabilitation Act that outline what standards newly constructed and altered buildings must meet in order to be considered accessible. The Department had announced it’s intention to make the change in May and that it would take effect July 15th unless significant adverse comments were received. Well, after more than 20,000 adverse comments, the Trump Administration is delaying the rule change until September 12, 2025. Sometimes speaking out and protesting really works, and sometimes it leads to TACO! All kidding aside, there are more than 80 regulations under Section 504 of the Rehabilitation Act that have been a key to accessibility for the disabled over many decades. Advocates need to pay close attention to all further action by the administration in this area.

Update on Trump's Big Beautiful Bill

On May 22, 2025, the House of Representatives passed President Trump’s bill that cut’s taxes for wealthy people at the expense of the most vulnerable groups, particularly the disabled and poor people. The bill does not specifically say that legislators are cutting Medicaid funding. The House was indirect and much more devious, and it enacted work requirements and other onerous paperwork qualification obstacles for Medicaid recipients. Talk of attacking waste and fraud is an attempt to disguise what is really happening. Federal funding to the States is going to be reduced as well by changing funding formulas. WORK REQUIREMENTS AND MORE PAPERWORK ARE SIMPLY MEDICAID CUTS IN DISGUISE. Reputable analysts of the bill estimate that Medicaid will be cut by well over $700 Billion. SNAP which is the food lifeline for the poor and vulnerable, will be cut by $300 Billion. It has also been estimated that over 10 Million and as many and 14 Million people will lose health insurance as a result of this bill. The policies in the bill enacted by the House will put the entire disabled community at risk, all to ensure that already wealthy people get to keep even more of their money. State programs and services for the disabled will be severely stressed. More people will go hungry. The bill now moves to the Senate. Some of the Senators already recognize how unpopular these Medicaid cuts will be. If the recent past is any indication, however, Senators may cave to pressure from the administration and vote for the bill anyway. The majority in the Senate likes those tax cuts for the rich, and Senators fear the wrath of the President and want to keep their jobs at all costs. So, they may not act in the best interests of all of their constituents. The Disabled will be left behind. ACT NOW. GET INVOLVED. WRITE TO YOUR REPRESENTATIVES. PROTECT THE DISABLED.

Autism Spending Reduced Under Trump and RFK, Jr.

Between January and April of 2025, research spending on autism at the National Institutes of Health was about $31 Million less than the comparable period last year according to a Reuters review of the federal data. That is a 26% drop in spending compared to the previous four-year average. HHS Secretary Kennedy talks about wanting to find a cure for autism, but his priorities to do so are twisted. Secretary Kennedy has announced a $50 Million investment into the causes of autism. However much of that money will be spent for yet another study to find a connection between autism and vaccines. Every major past study, and there were several, has found no such connection. Secretary Kennedy is also turning away from the study of genetics as a cause of autism in favor of looking at environmental toxins as a potential cause. However well intentioned he might be, Secretary Kennedy is moving autism research away from scientific best practices and more toward his preconceived notions of why autism is so prevalent in our society today. As a mother of an autistic child I was desperate and for years I tried every so-called treatment and potential magic bullet to try and improve my child’s functioning and life. I learned the hard way that there is no miracle cure out there just waiting to be discovered. The federal government should continue to fund real scientific autism research to advance our knowledge.

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.

Governor Hochul's budget which is currently in front of the New York State legislature contains an 11% Cost of Living Increase ("COLA") that will benefit Direct Support Professionals (DSP’s) statewide. This increase for DSP's is long overdue and may finally be realized if this provision remains in the budget that is scheduled to be adopted in the coming days. Support this increase for DSP's by joining the rest of the Intellectual and Developmentally Disabled community and adding your voice. Contact your member of the Assembly and State Senator and tell them to support this 11% COLA increase. The 11% COLA increase will help to remedy the severe staffing shortages that organizations have experienced as a result of COVID. It will also reward those DSP's who kept your loved ones safe during this difficult time.

The most underappreciated workers in New York are about to get some long overdue financial relief and benefits. DSPs are the foundation of the New York system that services those with developmental disabilities. They perform work that is physically difficult and emotionally challenging. Yet they make as little as $12.50 per hour on average and gross less than $30,000 per year --- hardly a living wage. Not surprisingly, there is a severe shortage of DSP workers and agencies are terribly understaffed. The developmental disability community has lobbied Albany for years to increase DSP pay, but it mostly fell on deaf ears. Finally, Governor Hochul announced in late November 2021 that New York will provide over $1.5 Billion from President Biden’s American Rescue Plan to aid DSP’s and the agencies that employ them. This will include:

• Incentive payments to DSP’s who worked during the pandemic and money for those who got vaccinated
• Retention and longevity bonuses
• Money for recruitment and retention strategies to improve the overall stability of the DSP workforce

This financial relief for DSPs will finally reward these "heroes". It will help to ease the critical shortage of these workers going forward. The entire developmental disability community will benefit. The Acting Commissioner of OPWDD, in an end of year 2021 address stated that the funds noted above will be dispersed in the early part of 2022. Of course, further work needs to be done. New York should significantly increase the minimum wage for DSPs and OPWDD is continuing to advocate for that. In addition, OPWDD is engaged in more vigorous DSP recruitment and retention programs. For updates on all of this, contact your local OPWDD office and check the website at opwdd.ny.gov.

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.