Congress Let an Important Disability Rights Program Expire — Now People Are Trapped In Institutions

Imagine spending your life under someone else’s control, having to ask for permission each time you wanted to go out to eat, invite someone over, stay out late, or use the internet. For many Americans, this is their reality. Life in institutions and nursing homes often involves severe deprivations of the basic freedoms others take for granted. People with disabilities deserve better.

Over the course of the last several decades, the disability rights movement has fought to expand home and community-based services that assist people with disabilities to transition from institutions to the community. The 1999 US Supreme Court case, Olmstead v. LC, found that holding people in institutions, when they want to live in the community and can medically do so, is unnecessary segregation. Doing so violates both the Americans with Disabilities Act and our constitutional liberties.

The expansion of Medicaid home and community-based services offers people with disabilities a meaningful alternative to institutionalization. Now Congress has an opportunity to expand access to this vital pathway to freedom and independence.

Since 2005, the Money Follows the Person program has been a crucial resource for people with disabilities, supporting the transition of over 75,000 individuals with disabilities into their communities across 44 states. These transitions represent an opportunity for true integration after extended periods within the restrictive and regimented environments of nursing homes and institutions.

Money Follows the Person participants report significant and lasting improvements in quality of life and integration after returning to the community. In addition, their costs to Medicare and Medicaid decrease by approximately 20 percent. This represents an opportunity to improve a beneficiary's quality of life and freedom of choice, while helping to control long-term Medicaid cost-growth.

Unfortunately, Money Follows the Person expired on Sept. 30, 2016, and states are running out of funding. Sens. Rob Portman (R-Ohio) and Maria Cantwell (D-Wash.) have introduced legislation to reauthorize the program for five years. The EMPOWER Care Act would ensure that states continue to have access to the federal funding they need to transition people into the community. 

Last summer, the ACLU joined forces with disability rights advocates to defend the Medicaid program. We recognize that for the disability community it’s not just a health care program — it is the vehicle that allows people to live independently instead of in a nursing home or institution.

Opening the door to community life can be a costly proposition for states, but the federal funding from Money Follows the Person can help bridge that gap and allow people with disabilities to enjoy community living. Congress should act today to reauthorize this program by passing the bi-partisan EMPOWER Care Act. Every person deserves a chance to life in freedom on their own terms.

Add a comment (14)
Read the Terms of Use

Anonymous

For the long-term root cause, the ACLU needs to revisit the "Citizens United" reforms and Campaign Finance Reform. The post-Jimmy Carter election finance system has transformed James Madison's "Constitutional Democratic Republic" model of government into a quasi "Oligarchic Republic".

The net result is many, not all, members of Congress and state legislators are effectively employed by oligarchs instead of working for the American people. Currently oligarchs are their full-time gig and we are the part-time gig in the minds of most legislators.

Restoring the campaign finance system back the pre-1980's James Madison model, would make members of Congress and state legislators being "employed" by the American citizens instead of oligarchs.

For those not familiar, the ACLU has the best plan on the table. It doesn't totally ban corporate contributions but makes the system better represent the American people. Once Congress changes it's priority back to Americans and less to oligarchs, it also provides better representation of disabled Americans like outlined above.

Anonymous

Well said

richard

Very simple solution. No more lobbyist and their money should exist. Any body in a public office receiving money, or favors or promises of future favors should be tried for accepting a bribe (which is what it is) and if found guilty go to jail. Our Congress people now are nothing but whores selling themselves to the highest bidder out there. They have no morality, respect or conscious when it comes to the american people. How they can live with themselves is beyond belief. You congress people, you have givin away the United States of America to business people. You have disrespected all the people who have died for this country, all the people who have fought for this country. How can you even look at yourself in the mirror and not be disgusted, how can you look at your children and loved ones and not throw up knowing that you are selling them down them river. YOU ARE A WHORE AND NOTHING MORE. If there is a hell I hope you rot there. Our current president and all of you should be publicly flogged and all tied together and left to rot together. Your day is coming.

Anonymous

I totally agree.

Carolyn

Great points. Thank you.

Diane Engster, JD

The time has come to give Lois Curtis and Elaine Wilson their due and speak about how they received individualized supports in order successfully live in the community. Please use their names and mention how Lois Curtis continues to pave the way for this kind of community solution, especially during black history month!

It’s just as important to keep retelling the Lois Curtis story as it is to talk about others in the forefront like those who crawled up the Capitol steps.

Many people with disabilities today have no idea what her case meant. Some think that Olmstead was the plaintiff. Others talk about the “Olmstead Act.” Others have no idea they were in a psychiatric institution and the case applies to us.

Soul

Thank you

maryw

NOW A DAYS,,THIS OPIATE PHOBIA SWEEPING THE LAND HAS PUT MANY BACK IN BED OR HOME BOUND..BEING DENIED ACCESS TO THE ONLY MEDICINES THAT ALLOWED THEM ENOUGH LESSENING OF PHYSICAL PAIN TO BE ABLE TO MOVE, ENOUGH TO BE ABLE TO COOK FOR THEMSELVES,TO BE ABLE TO APPLY INDEPENDENT LIVING SKILLS W/ENOUGH LESSEN PAIN TO DO IT THEMSELVES..HOWEVER,,SINCE DR.GOVERNMENT HAS /IS NOW DENYING ACCESS TO THESE MEDICINES FOR THE MEDICALLY ILL..BECAUSE YOUNGER KIDS,ABUSIVE ADDICTIVE ADULTS HAVE CHOOSEN TO ILLEGAL OBTIAN THESE MEDICINES,,THUS NOW TURNING THEM INTO A DRUGS,,THE GOVERNMENT THRU PROPAGANDA,CHANGING OF DEFINITION THAT STOOD FOR 100 YEARS TO CONVICT THE INNOCENT,HAVE UNLAWFULLY TAKEN THESE LIFE SAVING MEDICINE AWAY FROM THE DISABLED THE,VERY HUMAN BEINGS ENCAPSULATED IN A MEDICALLY ILL BODY IN CONSTANT PHYSICAL PAIN,,THE VERY PEOPLE WHO NEED THEM,WHO USED THEM LAWFULLY.NEVER EVER HAS ANY MEDICALLY ILL HUMAN BEING WHO HAS TAKEN THEE MEDICINE OPIATES LEGALLY,;LAWFULLY, AS THEIR DOCTORS HAVE PRESCRIBED THEM,WE HAVE NEVER EVER ENDED UP IN ANY E.R.,,,EVER,,YET WE ARE NOW BEDRIDDEN OR HOUSE BOUND BECAUSE DENIAL OF ACCESS TO THESE MEDICINES HAVE TAKEN AWAY ARE ABILITY TO SIMPLY MOVE,,W/OUT SEVERE PHYSICAL PAIN,,HECK SOME OF US,CAN'T EVEN BREATH W.OUT PHYSICAL PAIN,,YET OUR MEDICINES HAVE BEEN FORCIBLE TAKEN FROM US,BY OUR OWN GOVERNMENT..
ALL FOUR HUMAN RIGHT ORGANIZATION ON THIS EARTH HAVE STATED,DENIAL OF ACCESS TO EFFECTIVE MEDICINE TO LESSEN PHYSICAL PAIN FROM PAINFUL MEDICAL CONDITIONS ARE COMMITTING THEE ACT OF TORTURE,,,,,THAT IS A FACT,,THAT THE GOVERNMENT OF AMERICA HAS COMMITTED,,BY MAKING HUMANBEINGS DISABLED BY TAKEN AWAY THE MEDICINES,THAT ALLOWED THEM TO INDEPENDNTLY LIVE,IN LESSEN'D PHYSICAL PAIN TO BE ABLE TO MOVE,TO SEMI-FUNCTION.NO NORMAL HUMAN BEING WOULD WANT TO LIVE THE REST OF THEIR LIFE,IN FORCED PHYSICAL PAIN,EVERY SECOND,EVERY MINUTE OF THEIR ENTIRE LIFE,,AND THEY IGNORANT REFUSE TO ACKNOWLEDGE,THAT THIS FORCED PHYSICAL PAIN ONTO THE WEAKEST IN SOCIETY,THIS FORCED PHYSICAL PAIN ONTO A NORMAL HUMAN BEING WOULD NOT CAUSE ANY NORMAL HUMAN BEING TO WANT TO END THE PHYSICAL PAIN THRU DEATH,IF THAT WAS THEE ONLY OPTION EFT TODSTOP THE PHYSICAL PAIN,ANY NORMAL HUMAN BEING WOULD USE DEATH,TO STOP PHYSICAL PAIN,TO STOP THAT FORCED PHYSICAL PAIN BY KILLING THE BODY ENCAPSULATED W/THAT PHYSICAL PAIN.ANY NORMAL HUMAN WOULD WANT THAT FORCED PHYSICAL PAIN STOPPED.WHEN DENIED ACCESS TO MEDICINE ANY NORMAL HUMAN BEING WILL WANT,TO STOP PHYSICAL PAIN?ONLY DEATH,WILL STOP SAID PHYSICAL PAIN,IF THE MEDICINE TO STOP PHYSICAL PAIN,IS FORCIBLE DENIED ACCESS TO,,,WHY IS THATS SOO HARD TO UNDERSAND?ITS NOT,THEY/THE GOVERNMENT DOES NOT WANT TO ADMITT,THE REASON SO-CALLED ,''SUICIDES'' OR DEATH W/DIGNITY,THE TRUTHFUL ,''LABEL,''HAVE GONE UP,,NOT DOWN,,SINCE THEIR WAR ON CHRONICALLY MEDICALLY ILL HUMAN BEING ,IN FORCED PHYSICAL PAIN.TO SAFE INSURERS $$$,,,THE REASON SUICIDES HAVE gone up,not down,,is the government is forcing normal human being to live in physical pain,ever second,every minute of their lives,and no NORMAL human being would live their life in forced physical pain,no-one would want to live their life,if every second of it,was physically painful from a painful medical condition,,,they know this,,could it be genocide? To save$$$.,,many many think yes,,THEE ONLY PERSON WHO EVER THOUGHT HE HAD THE RIGHT,TO TORTURE ANOTHER LIVING HUMN BEING,,WAS ADOLF HITLER,,maryw....
pss writing in caps,,bad vision tonight,,not yelling

Cathy

You've said it all Mary. Thank you!

Catherine Gray

Without the Money Follows the Person initiative, my son would have transferred to another ICF/MR when he graduated high school! The opportunity afforded him to leave such a restricted environment and pursue his optimal quality of life , free from abuse and void of limitations, has allowed my son to flourish! He's much happy in his own home, making his own decisions about his own life!

Pages

Stay Informed