Information on the new law GKV-IPReG

Guest contribution by Christiana Hennemann, business director of rehaKIND support association

Christiana Hennemann
Christiana Hennemann

The GKV-IPReG is a law that is intended to strengthen intensive care and rehabilitation. Applicable to statutory health insurance companies, the statute had already sparked much controversy in its formative phase. The first draft, known as RISG, was strongly criticized by relevant associations and affected individuals. It sparked such vociferous protests in front of the Bundestag that the Federal Ministry of Health changed the statute’s name and contents several times before the law ultimately took effect under the name IPReG at the end of 2020. Health Minister Spahn promised: “People who need intensive care should receive it at whatever location is best for them. Mandatory quality specifications for intensive care at private homes, in hospitals and in institutional residential facilities are intended to ensure that care is strengthened, especially for patients who are often no longer able to speak for themselves.” But affected individuals and their relatives view the situation quite differently. They are acutely concerned that self-determination will be massively curtailed. The decision as to where long-term care will be given now lies with the health insurers and the Medical Service of the Health Funds. The IPReG does not reflect the system of out-of-hospital intensive care, which was established many years ago and is supported by qualified homecare providers and nursing services to enable optimal participation and self-determined living at home. Recipients and givers of intensive care are wary of a tendency toward long-term hospitalization of patients under the pretext that nursing care is better provided in institutional facilities than in family environments.

The Federal Joint Committee (Gemeinsamer Bundesausschuss – GBA) is now tasked with drafting the implementation guideline for the IPReG. Associations of patients and professional groups are among those that have been invited to submit comments. The Interest Group for Self-determined Living (Interessengemeinschaft Selbstbestimmt Leben –ISL) writes in the conclusion of its commentary on the submitted draft guideline: “A common thread of external control and professed solicitude, coupled with a very obvious strengthening of institutional care and efficiency, runs through the guideline. Contrariwise, the affected individuals deserve to be regarded as self-determined, competent and capable people. The insured persons affected here are not objects to passively receive solicitous authoritarian treatment, but possess the right, the power and the self-determination to make their own decisions. The right of wish and choice is not only anchored in the UN Convention on the Rights of Persons with Disabilities, but also in Germany’s constitution.”

Affected individuals and their relatives, experts from the fields of medicine, caregiving and medical technology, relevant associations and other activists have joined forces and formed a thinktank to develop provide constructive criticism of the IPReG. Their aim is to ensure that individual intensive care is provided in the genuine best interests of the affected individuals. The separation of care for children and adolescents as stipulated by the age limit of 18 years is extremely important for rehaKIND e.V. Families are already heavily burdened by the struggle for assistance and care options; far too few specialized caregivers are available; and since the beginning of the coronavirus pandemic, siblings must be looked after and taught via homeschooling. Everyone involved is at the end of their tether.

Since September 2020, expertise has been gathered in regularly scheduled Zoom meetings to inform the GBA and the Federal Ministry of Health about the realities of caregiving. These demands are also based on the UN Convention on the Rights of Persons with Disabilities, the German constitution, the social security laws and numerous fundamental publications.

At least one good thing has come from the IPReG: networking is progressing on personal and professional levels. New networks to ensure the individual quality of care have been formed and will continue to actively participate in shaping the legal and political framework. Two activists from the thinktank summarized their personal motivations in this regard.

The blogger and doctoral candidate in mathematics Tim Melkert views the issue quite pragmatically: “Through my work in the thinktank, I hope to have explained at least once to the members of the Federal Joint Committee (GBA) what degree of autonomy and self-determination some individuals with continuous ventilation like myself already enjoy today and how drastically our lives would be externally controlled and restricted if we were strictly subjected to the implementation guidelines specified by the GKV-IPReG.”

The journalist, care expert and activist Laura Mench likewise has her own opinion about IPREG: “As a person with a progressive disease whose perspective for the future involves invasive ventilation, I am personally affected and deeply concerned about the situation surrounding the GKV-IPReG. I am participating in the thinktank because only by working together can we influence events and contribute toward shaping the development of guidelines for implementation.”

Let us hope that the affected and concerned individuals, who are often the best experts in their own field, will be heard before the Federal Joint Committee (GBA) publishes the implementation guidelines. To help accomplish this goal, the thinktank is launching a poster campaign showing the great diversity in the people who need out-of-hospital intensive care and in the lives they lead. Many adults among them pursue productive careers and thus contribute to Germany’s gross national product.

Link to tips about the detailed essentials and participants of the thinktank: https://www.cody.care/gkv-ipreg-thinktank/

Link to the GKV-IPReG: https://www.cody.care/gkv-ipreg/